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Thank you to Luke David for helping plan 100th CampMDA!
Luke David visited the MDA Head Office to help CampMDA Coordinator, Georgia, (pictured) plan an amazing sporting activity for this year’s 100th CampMDA being held in September at Bacchus Marsh, VIC. Registrations for CampMDA are OPEN NOW via: www.campmda.org or call MDA on (03) 9320 9555 for further information.
(01 July 2015)Read more...
MDA wins $30k National Australia Bank grant for 100th CampMDA
On Monday 15 June, Muscular Dystrophy Australia (MDA) was awarded a $30,000 grant from the National Australia Bank to fund the 100th CampMDA which sees children and adults living with Muscular Dystrophy attend a weeklong respite camp.(29 June 2015)Read more...
You're invited to CampMDA's 100th Celebrations!
Help elebrate 100 amazing camps with a complimentary BBQ lunch and share stories with all of the wonderful people who have joined us on the CampMDA journey. The RAAF Band, prizes, games, the Red Bull team, a visit from the Harley Owners Group and many other exciting activities.
(28 June 2015)Read more...
Melbourne researchers learn more about FSHD2
Researchers at the Walter and Eliza Hall Institute have studied the genetic mistake that causes facioscapulohumeral muscular dystrophy type 2 (FSHD2) and discovered more about how it causes this muscle wasting condition.(22 June 2015)Read more...
Help two of our MD members reach their dream to meet Taylor Swift!
Keelin and Josh have a dream to meet their idol Taylor Swift when she visits Australia later in the year. You can help them reach this goal by liking and sharing their campaign page on Facebook to help generate attention.
(18 June 2015)Read more...
Entertainment Books for sale to support the MD community
Do you like dining out? Do you want to support MDA?
Thinking of purchasing an Entertainment Book filled with amazing meal deals and other exciting offers for Melbourne?
Support the MD community by purchasing it through Muscular Dystrophy Australia. Books are $65 each and can be picked up at the Head Office in North Melbourne. It can be posted to you for an additional P&H fee.
Call MDA on (03) 9320 9555 for more information.
To learn more about the Entertainment Book click on the 'Read more' link...(11 June 2015)Read more...
Two fundraising superstars present MDA with a cheque
MDA would like to say a huge thank you to our two newest fundraising superstars Carolina & Marnie, who raised an amazing $457.13 for MD programs, services and research. We were lucky enough to have them both visit the MDA office to present us with the cheque and receive their certificates of appreciation and giftbags. The students are in Grade Six at Sophia Mundi Steiner School, Abbotsford VIC, and decided to choose MDA as their charity of choice for their class project because they have a friend affected by MD. To raise funds they ran afterschool stalls, selling a range of delicious treats like smoothies, rice pudding and sherbet. They also raffled off wonderful prize hampers. Making everything by hand, the girls showed their impressive talent and everything looked absolutely impeccable.
What a brilliant display of thoughtfulness and compassion. On behalf of everyone at MDA and the MD community, we thank you so much for taking the time to join us in the fight against Muscular Dystrophy!
Well done, from Boris M Struk - MDA Executive Director.
To view photos of the stall, click on the 'Read more' link...(04 June 2015)Read more...
Well done! MDA passed the ISO 9001 Audit with 100% compliance
Muscular Dystrophy Australia (MDA) has just passed its recent ISO 9001 Audit with 100% compliance and the organisation’s Executive Director, Boris M Struk, says he could not be more proud of the achievement.
“Receiving the accreditation in 2013 was a wonderful accomplishment and placed MDA in a superior position in comparison to many other not-for-profit organisations. Now knowing that two years down the track we have maintained the sophisticated systems and high level of service since day one, it is a true testament to the dedicated work of MDA,” said Mr Struk.
An ISO 9001 Quality Management System (QMS) offers a comprehensive framework on which to build processes that help ensure key business objectives are achieved and the standard has received widespread international recognition. Mr Struk credits the outstanding result to the diligence and commitment by staff to uphold the stringent procedures in place to ensure it meets audit requirements all year round.
To read more about the ISO 9001 Accreditation click on the ‘Read more’ link…(02 June 2015)Read more...
VIDEO: School taking part in Run Melbourne for two boys with DMD
A special group of people from Verney Road School, Shepparton, are taking part in Run Melbourne 2015 to raise money for Muscular Dystrophy Australia in support of two special boys with DMD at the school.
Watch the beautiful video here which features the two boys who are the reason behind the event.
MDA would like to say a huge thank you to all that will be taking part and who have donated, you are all superheroes to us!
You can show your support by making a donation to their cause by clicking on the 'Read more' link...
Host a Workplace Superhero Day for MD, the fun isn't just for kids!
The official 2015 Superhero Day for MD flyer targeted specifically for corporates and workplaces has now been launched!
Get your workplace to host a Superhero Day for MD this National Superhero Week (31 Aug - 4 Sept 2015).
Together we can beat Muscular Dystrophy!
Click on the 'Read more' link to download the Corporate Registration Form...
Have your say on the new Disability Employment Framework
Today, the Abbott Government announced the launch of a national public consultation to inform development of a new Disability Employment Framework.
MDA is encouraging all members of the MD community - including those people living with MD, families, carers and disability workers - to either make a submission or attend a forum to have their voice heard. An Issues Paper has been released to encourage discussion about the current approach and the best ways to support people with disability to find long-term, meaningful employment.
To read more about the Disability Employment Framework click on the 'Read more' link...(25 May 2015)Read more...
People, pies and prizes all make for successful event for MDA
There’s nothing better than a delicious warm pie on a cold autumn’s night, unless, that pie is also served with a side of gratitude.
This is just what was on offer last Thursday night, 21 May, when long-time friends of MDA, Paul and Christine Freestone (pictured left), hosted a Pie Night to thank some very special supporters of MD. The married couple began supporting MDA over six years ago when they donned their hiking boots and trekked Nepal along with a group of other like-minded people in the ChallengeMD! 2009 Nepal event.
More than 60 people gathered at the Freestone’s ‘man cave’ in Tullamarine to network, share stories and join together in the fight for MD... [CONTINUES]
To view the full article and photos click on the 'Read more' link...(25 May 2015)Read more...
IT'S A BIRD... IT'S A PLANE... NO IT'S THE NEW MDA MASCOT!
Check out the new MDA mascot who's just flown into our offices!
Proud supporter of 2015 Superhero Day for Muscular Dystrophy - Rubie's Deerfield - have loaned MDA a life-size Superman to get us all excited for this year's National Superhero Week (31 Aug - 4 Sept).
Register for the event at: www.superherodaymd.com(21 May 2015)Read more...
Dystrophy Divas help raise more than $4,000 for MDA!
A big thank you to the amazing Dystrophy Divas for organising the second annual Coffex morning tea to raise funds for MDA and having a special Mother's Day twist this year! And a special thank you to long time supporter of MDA, Coffex Managing Director Fong Loong, for graciously providing the use the space and his time to help host the event.
Last weekend, Saturday 2 May, saw close to 50 people gather at the Coffex Head Office in Brunswick for a delicious brunch of savoury and sweet delights, along with an informative barista session and a tour behind the scenes of the coffee roasting factory...[CONTINUES]
To view the full article and photos click on the 'Read more' link...(08 May 2015)Read more...
Congratulations on completing your degree, Ryan Struk!
Muscular Dystrophy Australia would like to congratulate Ryan Struk on recently completing his Bachelor of Arts with Distinction (majoring in International Relations and Middle Eastern Studies) at Deakin University. Ryan has been a diligent student and dedicated himself to his studies, with all of his hard work paying off on Thursday 16 April when he attended his graduation ceremony.
MDA is very proud of Ryan for his excellent commitment to achieving this goal and we wish him all the best in this next chapter in continuing his education... [CONTINUES]
To view the full article click on the 'Read more' link...(04 May 2015)Read more...
Delays in MD diagnosis
Study finds parents frustrated with delays in MD diagnosis
A study supported by Muscular Dystrophy Australia has found that children with Duchenne MD are diagnosed at the age of five on average, but parents express concern about symptoms several years earlier. This delay is often stressful for families, impedes early access to treatment and increases the risk of having a second affected child...(28 April 2015)Read more...
Castlemaine Mail newspaper (front page): Zombies in Maldon
Maldon's Bluelight Youth Camp was a hive of activity last week when more than 50 people attended a camp for children with Muscular Dystrophy.
Muscular Dystrophy Australia hosted the five-day camp, which included a range of fun activities for the children and their carers such as a scary night time story telling by the fire, a range of arts and crafts and a fun Harry Potter night... [CONTINUES]
To read the full article click on the 'Read more' link...(24 April 2015)Read more...
New IVF technique helps family with MD
The first baby has been born in Europe as the result of a new IVF procedure that checks embryos for genetic disorders. The baby was at risk of inheriting Charcot-Marie-Tooth disease (CMT), a neuromuscular condition which falls under the umbrella of muscular dystrophy.(20 April 2015)Read more...
National charity wins Compassionate Employer Award
Tomorrow, Friday 13 March, Muscular Dystrophy Australia (MDA) will be receiving the ‘2015 Compassionate Employer Recognition Award’ at Parliament House, Melbourne, presented by Compassionate Friends Victoria Inc. to acknowledge its exceptional care provided to employees in difficult personal times.
The award aims to demonstrate best workplace practices in dealing with bereavement, to encourage the adoption of these practices in other workplaces and educate business and community about the impacts of the death of a loved one.
This award specifically pertains to the compassion shown to MDA’s Client Services Manager, Maria Kouppas, around the time of her mother’s passing in 2013...[CONTINUES]
To download the full Media Release click on the 'Read more' link...(12 March 2015)Read more...
Big Boys Toys car show raised not only funding but also awareness
Last Sunday, 8 March, saw revheads and car-enthusiasts flock from all around Victoria to Essendon Fields to take part in the inaugural Big Boys Toys Car Show with proceeds going towards Muscular Dystrophy programs, services and research.
The event was a huge success raising over $48,000, with more than 1,000 people in attendance and in excess of 200 cars on show. The day saw crowds of all ages lapping up the sun and taking in the amazing array of vintage, modern and custom cars on display. The grounds were abuzz with motoring aficionados talking shop and swapping stories... [CONTINUES]
To view the full article click on the 'Read more' link...(11 March 2015)Read more...
MDA will miss the beloved German Shepherd dog, Iva
MDA has been saddened by the loss of the beloved German Shepherd dog, Iva, who brought so much joy to our office. He passed away last night at the young age of six and was the loyal pet of MDA’s Executive Director’s son Leon Struk. Iva brought much happiness to the Future for Young Adults Program when he visited and was always thought of as the unofficial mascot for MDA.
Our thoughts are with the entire Struk family.
Hume Leader newspaper: Passion for cause revs up for show
Muscular Dystrophy Australia founder Boris Struk, from Greenvale, in his 1970 Corvette that will be one of the cars featured at the Big Boys’ Toys Car Show this weekend.
But his drive to raise money for muscular dystrophy research in honour of his son, Ryan, 35, hasn’t stopped, with the gears now in motion for a charity car show.
The Greenvale man founded Muscular Dystrophy Australia more than 30 years ago after Ryan was diagnosed, with about $43 million raised since. He hopes the community will support this weekend’s Big Boys’ Toys Car Show... [CONTINUES]
To download the full article click on the 'Read more' link...(03 March 2015)Read more...
Sunday Herald Sun (page 2): Fathers put feet first to fight disease
SUPERHEROES invaded Blackburn yesterday. But instead of soaring through the skies, a group of 112 “superdads” pounded the pavement in their battle against a different kind of kryptonite.
Brett Bugeja’s friends, colleagues and teammates united to support his son Ben (together, above left), 13, who has been diagnosed with muscular dystrophy.
They walked about 18km but it could have been a quick trip around the world as the dads were served beer and food from different countries at seven stops along the way... [CONTINUES]
To download the full article click on the 'Read more' link...(02 March 2015)Read more...
Thank you to all those who took part in Super Dads Walk 4
What a spectacular day Saturday was, 28 Feb, with 112 dads walking through the streets of Blackburn to support Muscular Dystrophy Australia. The day was a huge success and a lot of laughs were had by all. Thank you to Brett and Katrina Bugeja for organising the fourth annual ‘Super Dads Walk’. The Bugejas joined the MDA family many years ago when they took part in the very first ChallengeMD Vietnam 2006 pedalling from the north to the south... [CONTINUES]
To view the photos of the event click on the 'Read more' link...(02 March 2015)Read more...
Thank you: Freestones give their time freely to support MDA
It is a wonderful thing to have people join the Muscular Dystrophy journey along with MDA in providing continued support time and time again. This is very true for two dedicated supporters, Paul and Christine Freestone of Freestones Transport.
The married couple began supporting MDA over six years ago when they donned their hiking boots and trekked Nepal along with a group of other like-minded people in the ChallengeMD! 2009 Nepal event.
Since then the pair have contributed to the cause in numerous ways and most recently Paul, a keen motoring enthusiast, has branded his competing car for the upcoming Clipsal 500 Adelaide with the MDA logo... [CONTINUES]
To view the full article click on the 'Read more' link...(27 February 2015)Read more...
MDA sceptical over proposed changes: Disability Support Pension
“While I do believe there is definitely a need to ensure people receiving government welfare payments are truly eligible, I am nervous about the proposed simplification of the process. To me it doesn’t evoke a sense of reassurance that people with a disability will be treated as individuals, rather they may just be lumped into black and white categories with no room for grey area specific for their situation,” said Muscular Dystrophy Australia’s Executive Director, Boris M Struk.
A report by former Mission Australia chief Patrick McClure to be released today, recommends condensing 20 support payments to just five, and slashing the 55 supplements to just a handful to make the system simpler to administer.
“I am sceptical in that I hope this is not just a money saving venture designed to make reductions in the welfare, specifically disability, sector and I hope the money saved from the dubious claimants will be redistributed to benefit those who truly deserve the assistance,” said Mr Struk...[CONTINUES]
To download the full Media Release click on the 'Read more' link...(25 February 2015)Read more...
Clinical trial of new steroid drug VBP15 for DMD starts
ReveraGen BioPharma has announced the start of a Phase 1 clinical trial of a new steroidal drug, VBP15, for Duchenne muscular dystrophy (DMD). It is hoped that VBP15 will have at least the same benefits as the currently used corticosteroids, but fewer side effects. The trial, being conducted in the USA, will involve only healthy volunteers. This is standard practice for phase 1 trials and will give the first information about the safety of the drug in humans. If all goes well in the phase 1 trial, a phase 2 trial in boys with Duchenne MD should start later this year.(25 February 2015)Read more...
From the Desk
A message from MDA's Executive Director...
What an amazing event this year’s MDA Run for Strength was on Sunday! I would have to say it was our most enjoyable fun run held to date with a crowd of more than 1,000 people and so far we have raised close to $30,000. The weather was perfect with bright sunny skies and the crowd was in fantastic form with an abundance of happy smiling faces and laughs shared.
There were hundreds of superheroes zooming along the track and it was great to see so many of our MD community taking part. You can check out some of the event photos on our Facebook page here... [CONTINUES]
To view the full 'From the Desk' article click on the 'Read more' link...(17 February 2015)Read more...
2015 MDA Run for Strength photos now online!
Check out some of the amazing pics from this year's MDA Run for Strength Fun Run held on Sunday 15 February 2015.
The photos are viewable on the MDA Facebook Friends page here. Make sure you add MDA as a Facebook friend so you can keep up to date with everything that is happening in the MD community.
You can also like our MDA Facebook Company page here!(17 February 2015)Read more...
Article: Shorter family joins fun run - Condition no barrier for pair
MAX and Will Shorter race at breakneck speed around their grandparents’ backyard like normal little boys.
But unless a major medical breakthrough is made, the pair won’t grow quite like their contemporaries. Max, 5, and Will, 4, were diagnosed with Duchenne muscular dystrophy (DMD) just before Christmas in 2013.
Parents Belinda and Leigh said they noticed the pair were slow to walk and didn’t climb on couches or chairs like other kids their age.
Their calf muscles were also enlarged – a key sign of the muscle-wasting disease. “Duchennes is the most common one, but it’s also the worst one,” Mr Shorter said...[CONTINUES]
To download the full article click on the 'Read more' link...(11 February 2015)Read more...
Media: Disability Fun Run this Sunday hosted by TV journalist
This Sunday, 15 February, will see people from all walks of life including many members of the Muscular Dystrophy (MD) community flock to Albert Park Lake to take on the annual ‘MDA Run for Strength’ and the event will be emceed by well-known Seven News television journalist, Kristy Mayr.
“It is an absolute honour to have Kristy as our host for this year’s event as it is always encouraging to have high profile people take notice of Muscular Dystrophy and understand the need to raise awareness about this life-threatening condition which currently affects 1 in 1,000 people globally,” said Muscular Dystrophy Australia’s (MDA) Executive Director, Boris M Struk.
More than 1,000 people are expected to attend with some people participating in wheelchairs and others will be travelling from all throughout Victoria. In particular, a group of 60 people will be jumping on a hired bus from Ballarat to Melbourne to show their support for two young boys from their community who have recently been diagnosed with the muscle-destroying condition Duchenne Muscular Dystrophy (DMD)... [CONTINUES]
To download the full Media Release click on the 'Read more' link...(10 February 2015)Read more...
Seeking volunteers from the MD community to trial robotic arm
Marita Cheng's robotics company, 2Mar, has developed new control interfaces for her robotic arm, Jeva and we are looking for your help in finding participants for usability testing. Jeva has been designed to assist persons with a disability in performing activities of daily living, and the testing will provide invaluable feedback about Jeva and its interfaces.
The participants we seek should have limited upper-limb mobility, and the testing will require each user to complete a series of small tasks with Jeva, using an iOS, Android, Emotiv (head movement control) and/or Google Glass interface (eye tracking control), which will be provided. Each trial will take approximately two hours, and will be conducted at an accessible venue at The University of Melbourne, in late February to early March. Currently, the period they are looking at is Monday to Friday, between the 9th and the 20th of February. The slots are 9-11am, 11am-1pm, 1-3pm and 3-5pm.
If you are interested, or have any questions about the trial, please contact Ruwan Devasurendra at email@example.com, or call him on 0433550243.
Click on the 'Read more' link for further information...(30 January 2015)Read more...
Mornington Peninsula Leader: Students get a boost from camp
THE campers with Muscular Dystrophy Australia didn’t shy away from the slugs, bugs or beetles last week as they petted the spectrum of creepy crawlies during their stay at Camp Manyung in Mt Eliza.
More than 30 campers living with muscular dystrophy spent last week playing wheelchair sports, laser skirmish, karaoke and having party and casino nights.
For campers like Ashleigh Jamieson, 16, it was a great opportunity just to “see friends from all over that you never get to see”... [CONTINUES]
To download the article click on the 'Read more' link...(29 January 2015)Read more...
Condolences to the family and friends of Hayden Butler
MDA would like to extend its deepest condolences to the family and friends of Hayden Butler, a previous Melbourne Storm Under-20s player and supporter of MDA who died suddenly over the Australia Day long weekend.
“Hayden was a lovely young man who gave his time generously to support our Run for Strength Fun Run and he always took the time to have pictures with the little kids,” said MDA Executive Director, Boris M Struk.
“Our most sincere condolences for everyone at this difficult time which has come as such a shock to all.”
[PHOTO: Hayden Butler photographed at the 2013 MDA Run for Strength Fun Run.](28 January 2015)Read more...
Photos from January CampMDA available to view online now!
Check out some of the wonderful photos from CampMDA that was held last week at Camp Manyung, Mount Eliza VIC.
It was a fabulous week with many lifelong memories and friendships made.
Seeing all of the smiling and happy faces is a reminder of why our work at MDA to help the MD community is so important. Thank you to all who were involved.
To view the photos click on the 'Read more' link...(27 January 2015)Read more...
Message from Boris
Social Commentary Piece: Appalling discrimination in the UK
Hearing about the incident just a few days ago in England where a man with Duchenne MD was asked to leave a cinema because his ventilator was “too loud” and reported as a “nuisance” by some movie-goers has made me question how some people can be so cruel and ignorant.
This man, Richard Bridger 31, was basically told that his assisted breathing machine - which was keeping him alive - was such an inconvenience to others that he was no longer welcome to partake in the movie-going experience.
Do these people realise that air is free and while most of us have the luxury of breathing unassisted, people with MD often need to rely on a ventilator to sustain their life?... [CONTINUES]
To downloand the full message click on the 'Read more' link...(19 January 2015)Read more...
2015 MDA Run for Strength Registration Open Now
There is less than a month left until the annual MDA Run for Strength Fun Run being held at Albert Park on Sunday 15 February 2015.
You can register your participation by visiting the event website here.
We look forward to seeing you all on the day!(19 January 2015)Read more...
Camp for children with a disability brightens lives
“Muscular Dystrophy Australia (MDA) has been holding camps for children with Muscular Dystrophy (MD) for over 20 years and we are so excited to be hosting our 93rd CampMDA”, said MDA Executive Director, Boris M Struk.
Muscular Dystrophy (MD) is a term used for more than 60 neuromuscular disorders and it is defined as a progressive muscle destroying disorder which wastes all muscles away causing immobility, respiratory problems and cardiac complications. Many types of MD are considered life threatening and are known to drastically shorten life expectancy, which differs with each individual condition.
Duchenne Muscular Dystrophy (DMD) is the most severe form of MD and it affects young boys who are diagnosed between two and six years of age. CampMDA is a cornerstone service that MDA provides to those in the MD community and is one of the most important activities which MDA facilitates as it provides over 14,000 hours of respite per annum to families of affected children... [CONTINUES](19 January 2015)Read more...
Research Round-up 2014 – other muscular dystrophies and neuromuscular conditions
In the run up to Christmas we are publishing summaries of the progress made this year towards treatments for muscular dystrophies and related neuromuscular conditions. Muscular Dystrophy Australia supports people with any one of more than 60 neuromuscular conditions. We have already published updates for some of the more common conditions and this week we have the research highlights for the other conditions we cover.(15 December 2014)Read more...
MDA Harley Raffle No. 57 Winner
MDA Harley Raffle No. 57 Winner
Port Lincoln SA Australia
Ticket No. 8983
MEDIA CLIP: MDA interviewed on ABC News24 - Afternoon Show
Muscular Dystrophy Australia's Executive Director Boris M Struk was interviewed on Monday 8 December 2014 on ABC News24's Afternoon Program with Kim Landers and Tony Eastley in regards to the sad passing of disability advocate Stella Young.
You can view the video clip by clicking on the 'Read more' link...(10 December 2014)Read more...
Charity boss saddened by death of disability advocate Stella Young
“On behalf of myself and the Muscular Dystrophy community I offer our deepest sympathy to the family and friends of Stella Young who unexpectedly passed away on Saturday evening at the age of 32,” said Muscular Dystrophy Australia’s Executive Director, Boris M Struk.
“Stella was a truly brilliant woman who was such a strong advocate for the disability sector and her strength rang not from a victim mentality but as someone who wanted equality for the disability community rather than special treatment,” said Mr Struk.
The family of Young recently advised of her passing via a public statement. Young was born with Osteogenesis imperfecta, which is commonly known as brittle bone disease.
“Her sentiment of wanting a fair go for those living with a disability teamed with her quick wit and smart humour made her a formidable, and well respected, voice within the community,” said Mr Struk... [CONTINUES]
To download the full media release click on the 'Read more' link...(08 December 2014)Read more...
Research Round-up 2014 - SMA and ALS
In the run up to Christmas we are publishing summaries of the progress made this year towards treatments for muscular dystrophies and related neuromuscular conditions. This week we focus on the conditions that affect the motor neurons – spinal muscular atrophy (SMA) and amyotrophic lateral sclerosis (ALS, also known as motor neurone disease or Lou Gehrig's disease).(04 December 2014)Read more...
Moonee Valley Leader paper: The place where men become boys
REVHEADS and car enthusiasts can get their motors running at the inaugural Big Boys Toys Car Show.
All proceeds from the Essendon Fields event will support Muscular Dystrophy Australia, with patrons expected to flock to the fundraiser to view display cars, including a police sheriff’s car, an old-time fire engine and the Batmobile.
Executive director Boris Struk said the show would turn “even the most hardened car buffs into boys”... [CONTINUES]
To view the full article click on the 'Read more' link...(03 December 2014)Read more...
Today we celebrate International Day of People with Disability
“Today is ‘International Day of People with Disability’ and we at Muscular Dystrophy Australia are very proud to celebrate our members, as well as the wider disability community,” said Muscular Dystrophy Australia Executive Director, Boris M Struk.
“Our members wish not to be described as heroic or brave for simply living with a disability, rather they would like people to simply see past their physical or mental differences and appreciate what they choose to do with their lives,” said Mr Struk.
Muscular Dystrophy is a progressive muscle-wasting disorder and people with the advanced stages of MD may need to rely on a wheelchair for mobility and a ventilator to assist with breathing for without this vital equipment they would not survive... [CONTINUES]
To download the full media release click on the 'Read more' link...(03 December 2014)Read more...
MDA's inaugural Big Boys Toys Car Show is on this Sunday!
For the first time ever, MDA is hosting a fundraising car show at Essendon Fields this Sunday 7 December.
Entry is $5 and $25 to display a car. Open from 9am - 5pm.
We hope to see you all there supporting the MD community!
Click on the 'Read more' link to visit the event website...(01 December 2014)Read more...
(27 November 2014)Read more...
Disability organisation welcomes inquiry to clean up sector
“Muscular Dystrophy Australia fully supports the Victorian Government and Opposition’s pledge to hold an inquiry into the state's disability sector, amid allegations one of Australia's biggest disability providers failed to act on warnings about sexual abuse on clients,” said Muscular Dystrophy Australia’s Executive Director, Boris M Struk.
“As the head of national disability organisation I welcome attention being placed on our sector to help rid it of any misconduct or inefficiencies that may have invaded some organisations,” said Mr Struk.
Muscular Dystrophy Australia provides care, services and research to the 1 in 1,000 people affected by MD and is also an advocate for both its members and the wider disability community.
The Board of Yooralla announced today that it had accepted the resignation of CEO Sanjib Roy effective from Sunday 23 November 2014, after Roy headed the organisation for more than six years... [CONTINUES]
To download the full media release click on the 'Read more' link...(24 November 2014)Read more...
Research Round-up 2014 – Duchenne and Becker MDs
Over the coming weeks we will be publishing summaries of the progress made this year towards treatments for muscular dystrophies and related neuromuscular conditions. First up are Duchenne and Becker MDs which are trailblazing the way forward.(21 November 2014)Read more...
Big Boys supporting little boys in a charity car show: Sun 7 Dec 14
The first Sunday in December will see revheads and car enthusiasts flock from all around Victoria to Essendon Fields to take part in the inaugural Big Boys Toys Car Show which is set to be a spectacular event, with proceeds supporting a much needed cause - Muscular Dystrophy (MD).
“This is truly an event which will turn even the most hardened car buffs into boys - like kids on Christmas morning with so many shiny toys to admire and explore,” said MDA Executive Director, Boris M Struk.
The event being held on 7 December 2014 is hosted by Muscular Dystrophy Australia and supported by Middy’s - Electrical & Data Supplies Wholesaler, with all proceeds going to support care, programs and research for the Muscular Dystrophy community... [CONTINUES]
To download the full Media Release click on the 'Read more' link...(17 November 2014)Read more...
Thank you to our young MDA fundraising superstar Connor Hall, 16
Muscular Dystrophy Australia would like to send out a huge congratulations and thank you to our newest fundraiser Connor Hall, aged 16, from Bendigo VIC. Connor has Duchenne Muscular Dystrophy and decided to run a fundraising lolly competition at this school from his own initiative to raise money for MDA.
He sat at his school canteen at Weeroona College, Bendigo, for over a week giving up his lunch break to collect guesses and donations. He was able to raise a very impressive $120.
We are so proud of Connor and really appreciate his thought and effort that went into helping raise money for care, research and programs for the MD community.
To check out photos of Connor receiving a MDA Certificate of Appreciation in front of his school last week click on the 'Read more' link...(13 November 2014)Read more...
2015 MDA Run for Strength - Registrations Open Now!
Save the date: Sunday 15 February 2015
Next year's MDA Run for Strength Fun Run will be the biggest and best Muscular Dystrophy Australia (MDA) has ever hosted and you can sign up now to take part.
DATE: Sunday 15 February 2015
TIME: From 8am (Fun Run begins at 9am)
LOCATION: Albert Park Lake, Melbourne
COST: Under 14's free, $30 Registration Only or $45 Registration PLUS Event T-shirt/Singlet
CELEBRITY HOST: The event will be emceed by well-known TV Reporter - Kristy Mayr
If you have any questions please feel free to call MDA directly on (03) 9320 9555.
To download the event flyer click on the 'Read more' link...(11 November 2014)Read more...
Check out all of MDA's publicity, media releases and coverage
You can view all of MDA's publicity and media coverage by visiting the MDA Publicity Page by clicking here.
To view or download any of MDA's media releases you can visit the Media Releases Page by clicking here.(15 October 2014)Read more...
MDA boss is finalist in Victorian Senior Australian of the Year Award
Muscular Dystrophy Australia (MDA) is proud to announce that the MDA Executive Director, Boris M Struk, has been chosen as a finalist in the Victorian Senior Australian of the Year Award.
There are four finalists in this division and Mr Struk has been chosen alongside three academics with the other finalists comprising of a Neurologist, a Microbiologist and a Bioinformatician.
“It is an absolute honour to be one of four candidates competing for this prestigious award and I am privileged to be chosen in contention with such high calibre finalists in my category, as well as all whom were nominated,” said Mr Struk. [CONTINUES]
To download the full media release click on the 'Read more' link...
(08 October 2014)Read more...
Phase 3 Duchenne MD clinical trial starts recruitment
Sarepta Therapeutics has started recruiting for its phase 3 clinical trial of exon skipping drug ‘eteplirsen’ in the USA. This drug has the potential to treat around 13 percent of boys with Duchenne muscular dystrophy (MD) — those with a particular genetic change (or mutation). It is designed to correct mutations located near exon 51 of the dystrophin gene.(07 October 2014)Read more...
2014 National Superhero Week Media Coverage
2014 National Superhero Week received an amazing amount of media coverage from television appearances on Channel Nine's Today Show and Channel Nine News, to masses of regional and metro newspaper articles including a feature in the Herald Sun newspaper, as well as radio coverage.
You can view all event media on the Superhero Day for MD Facebook page by clicking here or on the ‘Read more’ link.
Some of the notable media coverage is listed below:
- Channel Nine News video clip
- The Today Show with Karl Stefanovic video clip
- The Today Show tweet
- Herald Sun newspaper
- Bendigo Advertiser newspaper: Front Page
- Canberra Times newspaper
National launch of Superhero Week featured on Channel Nine News
The national launch of Superhero Week was featured in a short clip on the Channel Nine News presented by Peter Hitchener yesterday 3 September 2014 .
You can watch the video here or click on the 'Read more' link...(04 September 2014)Read more...
MEDIA ALERT: MDA on Channel 9’s Today Show Mon 1 Sept 7.50am
In very exciting news, MDA would like to announce that our Executive Director Boris M Struk has been scheduled to be interviewed in a live cross from a school celebrating Superhero Day for MD with Channel Nine's Today Show on Monday morning 1 September 2014.
Boris will be chatting to Karl Stefanovic and Lisa Wilkinson via video link on the first day of 2014 National Superhero Week.
Date: Monday 1 September 2014
Time: Approximately 7.50am
Where: On Channel Nine's Today Show
About: 2014 National Superhero Week
Tune in and make sure to catch the interview live! We will also be posting a link to the segment once we obtain it.(29 August 2014)Read more...
YOU CAN STILL REGISTER TO HOST A SUPERHERO DAY!
It’s not too late to register! We are still accepting registrations for Superhero Day for MD.
The publicised closing date has now been reached but we are still welcoming all late registrations.
As soon as you register you receive all information via email so you can start planning your event immediately and a hard copy kit will be posted within 3-5 days. You can also still order capes as long as you leave 5 business days for them to be posted to you.
For more information call MDA on (03) 9320 9555.
To download the Registration Form or Cape Order Form visit the event website at: www.superherodaymd.com(22 August 2014)Read more...
More than 20,000 participating in National Superhero Week
The second annual National Superhero Week for Muscular Dystrophy being held in the first week of September (1-5 Sept 2014) has already doubled its predicted participation from last year and is taking the country by storm with more than 20,000 people involved.
“Registrations for this year’s National Superhero Week have already far exceeded our expectations with all types of organisations and schools set to host the event; from schools with 1,500 students to stores of national companies such as Hairhouse Warehouse, Telstra, Masters and more taking part,” said Muscular Dystrophy Australia’s Executive Director Boris M Struk.
“We have every state and territory across the country on board for the event from childcare centres in rural Western Australia to several Telstra stores in New South Wales, and everywhere in between. Raine & Horne Real Estate in Darwin is in fact hosting a week-long Superhero waterfront event,” said Mr Struk...[CONTINUES]
To download the full Media Release click on the 'Read more' link...(14 August 2014)Read more...
Article: MDA ED nominated for Australian of the Year
FOR more than three decades Boris Struk has pooled all his resources into finding a cure for muscular dystrophy.
His son Ryan, 34, was diagnosed with the condition at age three, with doctors telling the family he wouldn’t live past 14.
Determined to find answers, the Greenvale man founded Muscular Dystrophy Australia (MDA), an organisation that has since raised about $43 million for research and support services.
“At first it was to try and change the course of the diagnosis and that was to find a treatment or cure for MD that we might benefit from,” Mr Struk said... [CONTINUES]
To read the full article click on the 'Read more' link...(11 August 2014)Read more...
Local charity hero nominated for Australian of the Year Award
Muscular Dystrophy Australia’s (MDA) Executive Director, Boris M Struk, has been nominated for both the 2015 Australian of the Year Award and the 2015 Australia’s Local Hero Award.
“It is a true honour to be nominated for both of these awards and I would like to thank the local community for supporting me in this acknowledgement of my work in founding MDA,” said Mr Struk.
In an early show of recognition for Boris, the Australian of the Year Awards profiled his nomination on their social media page which led the way for an outpouring of support from hundreds of people across the country.
Boris has been nominated for the two aforementioned awards out of the total four awards, with the other two remaining categories being the 2015 Young Australian of the Year and 2015 Senior Australian of the Year... [CONTINUES]
To download the full Media Release click on the 'Read more' link...(05 August 2014)Read more...
From the Desk
A new message from the MDA Executive Director Boris M Struk
We are already half way through 2014, where has this year gone?
I know like for many of you the days and weeks seem to slip by and all of a sudden I’m shocked by the fact we are now closer to this year’s Christmas than last Christmas.
Over the past year I have had the privilege of being the 79th President of the Rotary Club of Essendon, a role which was both challenging and rewarding. My presidency has just ended and I am thankful for the experience. I also thank the club for their support as they made a donation to Muscular Dystrophy Australia of $6,000 to help with the building of a meeting room on the second level of our Head Office. A highlight of my term was visiting Myanmar on official duties with other Rotarians in April.
During the trip we visited The Eden Centre (very similar to MDA’s Futures Program) for children with disabilities, a few of which had Muscular Dystrophy... [CONTINUES]
To read the full post click on the 'Read more' link...(01 August 2014)Read more...
MDA Executive Director nominated for Australian of the Year Award
MDA Executive Director Boris M Struk has been nominated for two awards: Australia's Local Hero and Australian of the Year for 2015.
The Awards have chosen to feature Boris' nominations on their Facebook page (click here to view) and in their national e-newsletter which you can view by clicking on the ‘Read more’ link.
The team at Muscular Dystrophy Australia would like to congratulate MDA Executive Director Boris M Struk on his nominations.
Well done Boris and good luck with the awards!
Clinical trial for congenital muscular dystrophy to start
Swiss pharmaceutical company Santhera has announced that it will soon start a clinical trial of a drug called omigapil in children with congenital muscular dystrophy (CMD).
The study (called CALLISTO) will take place in the USA and will assess the safety, tolerability and pharmacokinetics of omigapil. Pharmacokinetics involves measuring how much of the drug reaches the blood stream, which will help to determine the optimal dose for a subsequent clinical trial.(22 July 2014)Read more...
Muscular Dystrophy Australia boss shocked & saddened by deaths
“It is a sad day for the Muscular Dystrophy (MD) community with the loss of these two young men in Perth and we at Muscular Dystrophy Australia offer our deepest condolences to the families at this heartbreaking time,” said Muscular Dystrophy Australia’s Executive Director, Boris M Struk.
It has been reported that two men with Muscular Dystrophy, both aged 25, living in the southern Perth suburb of Beaconsfield have died at their home during yesterday’s major storms in which their residence lost power.
“As the coroner is still yet to make a final report I do not want to speculate on the details of the incident but one very real issue that people with Muscular Dystrophy face daily is ensuring they have access to power at all times to run their ventilators,” said Mr Struk.
“Many of us worry about the materialistic things in life, about having a nice enough home, the newest car or even enough cash to go out on the weekend. But for a person with severe MD they face the fear of not being able to breathe without the assistance of the mechanical intervention of their ventilators,” said Mr Struk... [CONTINUES]
To download the full Media Release click on the 'Read more' link...
(15 July 2014)Read more...
2014 SUPERHERO CAPES ARE NOW FOR SALE
In preparation for this year’s 2014 National Superhero Week (1 - 5 September), you can now purchase the iconic red MDA Superhero Capes! Each cape is $10 (+P&H).
Anyone can wear these capes during National Superhero Week regardless of whether you’re hosting the event or not, so it is a way for every single person to get involved and help support research for MD. Please call MDA on (03) 9320 9555 prior to placing your order to ensure there is enough stock available for your request and to attain the price for postage and handling (P&H). All P&H rates are calculated by Australia Post guidelines. It is advisable to place one bulk order to minimise these costs.
As with all funds raised for Superhero Day, proceeds from the sale of these capes will be going towards supporting research at the National Muscular Dystrophy Research Centre (NMDRC). Deadline for all cape orders is: Monday 18 August 2014.
To download the Order Form click on 'Read more' link...
ChallengeMD! Great Ocean Walk 2014 - Experience what is destined to become one of the world's greatest hikes while supporting MDA through this local challenge!
Opened in 2006, the Great Ocean Walk spans 91km of spectacular coastal scenery, deserted wild beaches, sheer cliffs, historical lighthouses and shipwrecks, giant mountain ash forests and abundant native wildlife. It is destined to become one of the great walks of the world and it’s here right on our doorstep.
Registrations are now open for the 2014 event scheduled from 7th to 10th November 2014.
(04 July 2014)Read more...
Thank you to our valued volunteer Rhiannon Robinson
On behalf of myself and Muscular Dystrophy Australia I would like to extend a huge thank you to Rhiannon Robinson for so generously volunteering her time and graphic design skills to designing the new 2014 Superhero Day for MD ‘Event Info Booklet’.
We are so grateful to you for doing such a wonderful job on the booklet and choosing to help the MD community. MDA is largely self-funded and so we do rely on volunteers to help us out in order to continue to provide the best possible care and support for our members.
If you would like to know more about Rhiannon you can visit her Linkedin profile by clicking on the 'Read more' link...
Well done Rhiannon, we thank you.
Boris M Struk
MDA Executive Director(03 July 2014)Read more...
Register now for 2014 Superhero Day and help Make a Difference
This is a national event that anyone can host, from schools, workplaces, community groups and more!
All proceeds from the event go to MD research at the National Muscular Dystrophy Research Centre.
Call MDA for more information on (03) 9320 9555.
Click on the 'Read more' link to download the Registration Form...(02 July 2014)Read more...
MDA Harley Raffle No. 56 Winner
MDA Harley Raffle No. 56 Winner
Chadstone VIC Australia
Ticket No. 1571
Disability organisation takes a stand against axing of ‘Ramp Up’
“The Abbott Government’s lack of support for the disability community is echoing loudly today with the axing of funding for the advocate website ‘ABC Ramp Up’ and we at Muscular Dystrophy Australia want to ensure that voice is not lost by initiating a similar platform which is not at the mercy of the government,” said Muscular Dystrophy Australia’s Executive Director, Boris M Struk.
“Scrapping a website which provides an avenue for social and political commentary from the perspective of those living with a disability is an abhorrent decision which only highlights the government’s complete disregard for this sector of the population,” said Mr Struk.
“MDA is working towards ensuring that the voice of this community is not muzzled for too long and we are currently in the process of creating a new universal platform for any person in the disability community to have access to, regardless of condition, and have the ability to provide content for the site,” said Mr Struk...[CONTINUES]
To download the full media release click on the 'Read more' link...
(30 June 2014)Read more...
MDA to initiate ‘Ramp Up’ style page for disability community voice
Next Monday 30 June 2014 will be a grim day for the disability community of Australia when the advocate group website ‘ABC Ramp Up’ is scrapped due to the government’s decision to cease funding for the page.
“The government’s choice to axe funding for a website dedicated to providing a voice for those in the disability community is a detrimental loss to the public discourse as it removes a vital source of valid opinion and comment. It also highlights the government’s lack of support or care about this sector of the population,” said Muscular Dystrophy Australia’s Executive Director, Boris M Struk.
“As the head of a disability organisation and the parent of a son with Muscular Dystrophy I am appalled that this website has been valued so poorly by the government and to take action we at Muscular Dystrophy Australia plan to initiate a similar platform to Ramp Up which would provide a voice for all people in the disability community and would not be at the mercy of the government,” said Mr Struk... [CONTINUES]
To download the full media release click on the 'Read more' link...(27 June 2014)Read more...
Article: Removing Ramps And Silencing Disability Issues
By Ryan Struk
It was announced recently that the ABC's disability website, Ramp Up, launched in 2010, will be scrapped by the end of the month.
Seed funding for the website — provided by the Department of Social Services — was scheduled to cease at the end of June this year. The previous government had expected that the ABC, by this time, would have incorporated Ramp Up into their core operations.
Sadly the ABC board and management chose not to. It is the only dedicated online outlet for news, opinion and discussion by writers with disabilities in the mainstream media.
The outrage expressed by members of the disabled community has been significant and understandable. The Facebook group Save ABC Ramp Up, has already attracted almost 1,000 members since the announcement. A petition on change.org addressed to ABC Managing Director Mark Scott and Assistant Minister for Social Services Mitch Fifield, has been signed by about 17,000 supporters... [CONTINUES]
To read the full article click on the 'Read more' link...(26 June 2014)Read more...
First clinical trial tackling the cause of myotonic dystrophy started
Isis Pharmaceuticals has announced that it has started a phase 1 clinical trial of ISIS-DMPKRx — a drug designed to reduce the production of toxic molecules in the cells of people with myotonic dystrophy type 1. Previous clinical trials for myotonic dystrophy have only tested drugs aimed at relieving particular symptoms of the condition such as muscle stiffness or heart problems.(12 June 2014)Read more...
Host a Superhero Day for MD at your workplace!
Superhero Day for Muscular Dystrophy is an exciting and fun event that can be hosted by corporate or retail workplaces, for anyone to dress up as a superhero and raise money for much needed Muscular Dystrophy care and research, a condition which affects 1 in 1,000 Australians.
Nominate your workplace now to host an event during 2014 National Superhero Week, in the first week of September 2014 (Mon 1 Sept – Fri 5 Sept). You can be as creative as you like with the event. This is a fantastic opportunity for team building within your workplace while raising much needed funds for MD research.
To learn more about hosting a Superhero Day for MD at your workplace click on the 'Read more' link...
Register now for 2014 Superhero Day for MD!
- Child Care Centres,
- Community Groups,
- Workplaces and more!
2014 National Superhero Week is a fun and imaginative event for anyone to dress up as a superhero and raise money for much needed Muscular Dystrophy care and research, a condition which affects 1 in 1,000 Australians. People of all ages are encouraged to host a Superhero Day, from kindergartens and schools, to workplaces and community groups.
Anyone can nominate their school, workplace or community group to host a Superhero Day for MD event in the first week of September 2014 (Mon 1 Sept – Fri 5 Sept). Call MDA for more information on (03) 9320 9555 or visit the event website at: www.superherodaymd.com or Facebook page: https://www.facebook.com/SuperheroDayMD
Click on the 'Read more' link to download the Registration Form...(03 June 2014)Read more...
Moyne Gazette newspaper: Dinner helps muscular dystrophy
FINE dining has been used to raise some money for a good cause. Members of the Port Fairy Rotary Club recently came together for a progressive dinner.
This event was held to raise money for Muscular Dystrophy Australia. The progressive dinner included nibbles, mains and sweets served at three different locations around the town. John and Heather Clue served up the nibbles, Margaret Broers the main course and John and Marea Ellard hosted sweets.
The night raised $1000 which was presented to the executive director of Muscular Dystrophy Australia, Boris Struk, on May 19. Port Fairy Rotary Club president Hester Woodrup said the decision to hold the dinner for Muscular Dystrophy Australia was made thanks to a local connection... [CONTINUES]
To download the full article click on the 'Read more' link...
(29 May 2014)Read more...
Conditional approval of ataluren for Duchenne MD recommended in Europe
Ataluren is set to be the first ever drug licenced to treat the underlying genetic cause of Duchenne muscular dystrophy (MD). The European Medicines Agency (EMA) has received a recommendation from its advisory committee that ataluren should be given conditional approval.
Ataluren, which will now be known by the name “Translarna”, has been developed by PTC Therapeutics to overcome a specific change in the DNA called a “nonsense mutation” which causes 10 to 15 percent of cases of Duchenne MD. Clinical trials have indicated that the drug may be able to slow down the progression of muscle weakness.(27 May 2014)Read more...
HELP MDA WIN A SHARE IN $1 MILLION - We need your help!
The Dick Smith Foods Foundation have a competition going which will see over 70 charities win a share of $1 million, with prizes ranging from $10,000 to $50,000. To help MDA win a share in the prize money we need you to take a photograph of any Dick Smith Foods products in your pantry and email it to firstname.lastname@example.org together with the words:
“I vote for Muscular Dystrophy Australia, North Melbourne 3051".
You can also include your name and it will be added to the website so your vote will be publicly recorded.
For MDA to win, we must receive the most amounts of votes! Also, for every Dick Smith product shown in your photo, the votes add up. That means if you take a pic with yourself and 3 Dick Smith products, that will count as 3 votes for MDA!
Please help us win a share in this prize pool as it will go towards vital Muscular Dystrophy care and research, we want to win to help the MD community! Visit the completion website: http://www.dicksmithfoods.com.au/charity-breakthrough(22 May 2014)Read more...
Study of early signs of breathing problems during sleep in DMD
Currently there are no accurate predictors of the need for a sleep study in children with DMD. Symptoms of breathing problems in DMD are slow to develop, and often are not noticed by the individual. Once symptoms of waking with a headache or being sleep during the day are reported, a sleep study often finds that sleep-disordered breathing is already present.(21 May 2014)Read more...
Boy with MD's plea to raise $5k to meet his hero in Sydney
A young boy living with the debilitating condition Muscular Dystrophy wants to fulfil his lifelong dream of meeting his hero Marvel icon Stan Lee when he makes an appearance the Supanova comic convention in Sydney next month and his family is appealing to the public to help him reach his goal of $5,000 to fund the trip.
“I think a lot of our son Jacob’s superhero worship stems from the progression of his disease, he looks at them and wishes that he had some of those abilities. It gives him a chance to escape from the reality of his wheelchair and being dependant on others,” said Jacob’s father, Gary Marsden.
“He is the biggest Marvel comics fan you will ever meet, meeting Stan Lee would be a dream come true, a memory he will have and be able to talk about forever. He realises it would be a once in a lifetime opportunity,” said Gary.
To download the full Media Release click on the 'Read more' link...(20 May 2014)Read more...
MDA boss wary of Budget’s $20b Medical Fund: hopes it's genuine
Muscular Dystrophy Australia encourages the Government to prioritise medical research but with a Budget filled with so many hits to the average Australian there are concerns that this item which Abbott has professed will be “the largest of its kind in the world” is more a distraction rather than genuine commitment to the health of Australians.
“We need to keep in mind that while there is absolutely a need for future medical research which this fund is said to focus on, we cannot forget about those who currently have these conditions, such as Muscular Dystrophy, who need our help now,” said Muscular Dystrophy Australia’s (MDA) Executive Director, Boris M Struk.
The announcement of the Budget’s $20 billion Medical Research Future Fund last night was well received by those in the disability sector, in particular the Muscular Dystrophy community, however it is hoped that Abbott will also honour the NDIS, without compromise, which is currently in a review until mid-year... [CONTINUES]
To download the full Media Release click on the 'Read more' link...(14 May 2014)Read more...
Increasing blood flow may be of benefit in Duchenne MD
Results from a small clinical trial have shown that drugs that are usually prescribed for erectile dysfunction — sildenafil (Viagra) and tadalafil (Cialis) — might be able to reduce some of the symptoms of Duchenne MD.
In Duchenne MD, the essential muscle protein “dystrophin” is not produced. The main purpose of this protein is to protect muscles from damage during contraction. In addition, studies in mice have shown that without dystrophin, blood vessels supplying muscles do not adequately dilate during exercise, resulting in muscle fatigue and weakness. In mice this can be reversed with drugs such as sildenafil and tadalafil.(13 May 2014)Read more...
Add Muscular Dystrophy Australia as a Facebook friend today!
We need your help...
Help spread the word about Muscular Dystrophy and the work that MDA is doing by adding MDA as a friend on Facebook.
Please visit the MDA Facebook page and add us as a friend today. Also tell your friends about our page so they can add us as well.
The more people we can reach, the more people we can educate about this condition and hopefully Make a Difference in the lives of those affected and their families.
Muscular Dystrophy… Something worth fighting for!
Click on the 'Read more' link to visit the MDA Facebook page...(06 May 2014)Read more...
Herald Sun newspaper: Kids lose their king
The victim of a microlight plane crash Peter Doutch was a generous man who spent his spare time helping children with disabilities.
The father of two, who died after a microlight aircraft crashed into a Tyabb home on Sunday night, spent 15 years donating his time and karaoke equipment to entertain children with muscular dystrophy.
Mr Doutch was dubbed Mr Karaoke by the MD community for his role as a host. Muscular Dystrophy Australia’s executive director, Boris M Struk, said Mr Doutch was inspired to help after he was involved with printing the newsletter for the support group.
“He was always the first to lend a hand or crack a joke to make you smile,” Mr Struk said... [CONTINUES]
Click on the 'Read more' link to download the full article...(30 April 2014)Read more...
MD community mourns the loss of valued volunteer Peter Doutch
“It is with great sadness that we mourn the passing of Mr Peter Doutch in the tragic ultralight plane accident, he will be truly missed within the Muscular Dystrophy community as he was a fantastic volunteer for over 15 years,” said Muscular Dystrophy Australia’s Executive Director, Boris M Struk.
“Peter, or as we affectionately dubbed him ‘Mr Karaoke’, was a fantastic soul who volunteered at more than 25 respite camps for children with MD, CampMDA, as the host of a wonderful karaoke night.”
Mr Doutch was flying the ultralight plane over Tyabb on the Mornington Peninsula on Sunday 27 April around 5.20pm when crisis ensued and the plane crashed, leaving the only other passenger his 5-year-old daughter, Emily, in a critical condition. Mr Doutch was pronounced dead at the scene... [CONTINUES]
Click on the 'Read more' link to view the full article...(29 April 2014)Read more...
Castlemaine Mail newspaper: A train ride worth more than gold
A group of children and adults living with Muscular Dystrophy has enjoyed a a very special ride aboard the Victorian Goldfields Railway as part of the 93rd CampMDA at Maldon’s Derby Hill Blue-Light Camp.
More than 25 people participated in CampMDA last Wednesday with the age group of people affected by MD ranging from six to 30. Muscular Dystrophy Australia’s executive director Boris M Struk said the camp was a fantastic opportunity for those in the MD community to get together and socialise without the stress of having to arrange activities themselves.
“We commend the railway for having such wheelchair-friendly facilities, as it is not always easy to find activities that are suitable for a sizeable group with multiple wheelchairs."
Click on the 'Read more' link to download the article...(24 April 2014)Read more...
Sarepta to apply for accelerated approval of Duchenne MD drug
Sarepta Therapeutics has issued a press release which gives an update on their plans for the development of exon skipping drug “eteplirsen”. Eteplirsen is a ‘molecular patch’ designed skip a portion of the dystrophin gene called ‘exon 51’. It has the potential to treat around 13 percent of boys with Duchenne muscular dystrophy – those with a mutation in the vicinity of exon 51.(23 April 2014)Read more...
2014 Superhero Day for MD - REGISTRATIONS OPEN NOW!
Superhero Day for Muscular Dystrophy is a fun and imaginative event for anyone to dress up as a superhero and raise money for much needed Muscular Dystrophy care and research, a condition which affects 1 in 1,000 Australians. People of all ages are encouraged to host an event during 2014 National Superhero Week, from kindergartens and schools, to workplaces and community groups. Muscular Dystrophy is a muscle-wasting disorder that has 60 different variations and the focus of this event is on the paediatric form of MD - Duchenne Muscular Dystrophy – which mainly affects young children.
The event aims to promote a positive message for children living with Muscular Dystrophy, that just like a superhero that walks amongst everyone by day but hides a super strength; a child with MD is just like other children but has developed super powers of resilience, creativity and wisdom. Funds raised from the National Superhero Week will be going to support research at the National Muscular Dystrophy Research Centre (NMDRC) which is the leading MD research centre in Australia. Anyone can nominate their school, workplace or community group to host a Superhero Day for MD event in the first week of September 2014 (Mon 1 Sept – Fri 5 Sept).
Click on the 'Read more' link to download the Registration Form.
(14 April 2014)Read more...
Bendigo Advertiser newspaper: A Beautiful Ride
TWENTY-SIX people with muscular dystrophy took in the beautiful sights of Victoria's countryside yesterday as they chugged along the Victorian Goldfields Railway.
"It's wonderful, it's not something they could ordinarily do." - Boris M Struk
The excursion was part of a five-day camp run by not-for-profit organisation Muscular Dystrophy Australia; providing sufferers with a change of scenery and carers with a well deserved break. Muscular Dystrophy Australia executive director Boris M Struk commended the railway for having wheelchair-friendly facilities and said all participants loved the chance to ride an old steam train.
"It's wonderful, it's not something they could ordinarily do," he said. He said the organisation ran four camps throughout the year at a facility based in Maldon, which allowed participants a rare chance to socialise with other people suffering from the disease... [continues]
To view the full article click on the 'Read more' link...(10 April 2014)Read more...
MDA Singapore Visit to MDA HQ
What was quite amazing were not the differences, but the similarities, between our organisations’ direction through the range of programs and services delivered to our respective MD communities.
(10 April 2014)Read more...
Train ride worth more than gold for a group of people living with MD
Tomorrow will be a wonderful day in the lives of a group of children and adults living with Muscular Dystrophy as they board the Victorian Goldfields Railway for a memorable steam train ride as part of the 93rd CampMDA.
“We commend the railway for having such wheelchair-friendly facilities, as it is not always easy to find activities that are suitable for a sizeable group with multiple wheelchairs,” said Muscular Dystrophy Australia’s Executive Director, Boris M Struk.
The Victorian Goldfields Railway runs through the Goldfields of Central Victoria linking the historic towns of Castlemaine to Maldon, showcasing some of the richest gold mining areas in Australia. Over 25 people are participating in CampMDA with the age group of people affected by MD ranging from six to 30-years-old.
“Camp is a fantastic opportunity for those in the MD community to get together and socialise without the stress of having to arrange activities themselves. It also provides a chance for the families of the participants to have a break and know their loved one is being taken care of,” said Mr Struk... [Continues]
To download the full Media Release click on the 'Read more' link...(08 April 2014)Read more...
More than $3,000 raised in Golf Day fundraiser
The successful event was held at the Eynesbury Golf Club, Victoria, on 2 March raising $3,120 for Muscular Dystrophy Australia and no doubt a few glasses of celebratory beer were also raised at the end of the day.
(07 April 2014)Read more...
Big Boys Toys - Car Show & Family Fun Day
Essendon Fields (Essendon Airport) will come alive on Sunday 7th December 2014, with the roar of horsepower, muscle and exotic cars in the inaugural Big Boys Toys Car Show.(05 April 2014)Read more...
2014 Education Seminar
Teachers, teacher aids and carers invited to MD Education Seminar
Teachers, teacher aids and carers are invited to attend an upcoming Muscular Dystrophy Education Seminar being hosted by Muscular Dystrophy Australia on the 9th of May 2014 at the MDA Head Office in North Melbourne. This is a free Professional Development event targeted at those working at schools who have students with Muscular Dystrophy, as well as teachers who may like to further their knowledge about MD or can foresee the potential of a student with the condition entering their school.
There will be expert speakers presenting on the day, discussing topics such as classroom management; and methods to improve educational outcomes. Complimentary lunch will be provided to all in attendance on the day.
Date: Friday 9 May 2014
Time: 9am – 4pm
Location: MDA Head Office, 111 Boundary Road, North Melbourne VIC 3051
RSVP: To Lauren Oakley by Friday 2 May 2014 via phone: (03) 9320 9555 or email: Lauren.Oakley@mda.org.au
Click on the 'Read more' link to download the event flyer...(02 April 2014)Read more...
WANT TO WIN A HARLEY-DAVIDSON FATBOY?
Purchase a ticket for $10 in the MDA Harley-Davidson Raffle #56 for your chance to win this amazing prize worth over $30,000! Money raised from the raffle goes toward Muscular Dystrophy care, research, respite and information services. So help Make a Difference today by buying a ticket and encouraging others to do so. Winner will be drawn at 12pm on 30 June 2014 and will be notified directly by phone from MDA's Executive Director.
For more information or to purchase tickets over the phone, please call the Harley Raffle Hotline on (03) 9320 9565.
Otherwise you can download the Entry Form by clicking on the 'Read more' link and send it in via:
FAX: (03) 9320 9595 | EMAIL: email@example.com | POST: MDA, 111 Boundary Road, North Melb VIC 3051.
GOOD LUCK!(31 March 2014)Read more...
DMD clinical trial news: drisapersen might work after all
At the end of 2013 devastating news was announced – the phase 3 clinical trial conducted by GlaxoSmithKline had failed to prove that the exon skipping drug ‘drisapersen’ improved muscle function in boys with Duchenne muscular dystrophy (MD). However, the drug’s original developer – Prosensa – has revealed that, based on more clinical trial results, it may work if boys are treated younger and for longer.(25 March 2014)Read more...
Australasian Neuromuscular Network meeting being hosted in Melb
World-class scientists and professors will be gathering in Melbourne to focus on best practice models to ensure Australia and New Zealand are providing exceptional care and service to patients living with neuromuscular disorders, as well as safeguarding equal access to clinical trials and new therapies.
“This meeting of the Australasian Neuromuscular Network (ANN) is a significant event in world of neuromuscular disorders, in particular Muscular Dystrophy, because it provides a forum for multiple prominent organisations to join together and focus on how to improve the lives of patients,” said Muscular Dystrophy Australia’s (MDA) Executive Director, Boris M Struk.
The meeting is being hosted by the ANN in conjunction with the National Health and Medical Research Council (NHMRC) and will be held at the Murdoch Childrens Research Institute located at The Royal Children’s Hospital (RCH), Melbourne, on 27-28 March 2014... [CONTINUES]
To view the full media release click on the 'Read more' link...
(24 March 2014)Read more...
Super Dads raise more than $23,000
It’s amazing what can be achieved when you want to Make a Difference.
From day one when Brett and Katrina Bugeja joined the ‘MD Family’ they immersed themselves and their family and friends in supporting MDA. In fact our first ChallengeMD Vietnam 2006 saw Brett, Katrina and an army of friends join the historic pedal through Vietnam.(24 March 2014)Read more...
Spinal muscular atrophy clinical trial update
Promising news has been released from clinical trials of two possible treatments for spinal muscular atrophy (SMA) in recent weeks. This is encouraging news for families affected by SMA and the pharmaceutical companies are now in a race to be the first to prove that their drug is safe and effective.(17 March 2014)Read more...
Scientists, clinicians and MDA urge caution over stem cell “therapies”
Neuromuscular clinics and patient organisations including Muscular Dystrophy Australia have noticed a recent rise in interest in stem cell “therapies” being advertised by clinics in developing countries in Eastern Europe, Asia and South America. Numerous reports have surfaced of people traveling to these clinics and spending tens of thousands of dollars on these unproven procedures.(05 March 2014)Read more...
Congratulations to our first Superhero Day for MD hosts for 2014
Kelly's Plains Public School in Armidale, NSW, hosted their Superhero Day event early this year, celebrating it last Friday 21 February 2014.
Check out their feature article in the Armidale Express newspaper by clicking on the 'Read more' link below. .
Check out their feature article in the Armidale Express newspaper by clicking on the 'Read more' link below. .
(26 February 2014)Read more...
2014 MDA Run for Strength most successful event, 1,200+ people!
MDA would like to extend a huge congratulations and thank you to all those who participated in this year’s 2014 MDA Run for Strength fun run held at Albert Park Lake, on Sunday. The event was a fantastic opportunity for everyone to support the MD community and not even the rain damped spirits with race-goers completing either a 10km run, 5km run or 5km walk.
The park was abuzz with excitement and laughter as this year’s first superhero-themed fun run took place. Superman and Supergirl helped with the race warm up with many little heroes wearing the MDA red capes in the crowd. A significant amount of money was raised for care and research for MD and the total is yet to be finalised.
The fun run could not have been the success it was without the generous donation of time from many dedicated volunteers who were the backbone of this event. To everyone who kindly gave their time and to those organisations that sponsored the run, MDA thanks you with deep gratitude and appreciation.
We are looking forward to starting to plan the 2015 Run for Strength and hope we will see you all there next year!
To view photos of the event visit the MDA Facebook page by clicking on the 'Read more' link...(18 February 2014)Read more...
25 school mums running to support two students living with MD
25 mothers from the Strathmore North Primary School area are banding together to run in Muscular Dystrophy Australia’s ‘Run for Strength’ fun run to show their support of two young brothers, and students at the school, who have Muscular Dystrophy.
MDA’s fifth annual fun run is being held this Sunday, 16 February, at Albert Park Lake in Melbourne with proceeds from the event going to support both care for those in the MD community and research to help find a cure for the condition.
“It is an absolute privilege to have this group of mothers join together to run as a team in support of the two young brothers living with MD from their school community,” said MDA’s Executive Director, Boris M Struk... [continues]
To download the full media release click on the 'Read more' link.(10 February 2014)Read more...
Encouraging clinical trial results for oculopharyngeal MD
The results of a clinical trial have shown that transplanting cells from unaffected muscles into the throat may help with the swallowing difficulties that affect people with oculopharyngeal muscular dystrophy (OPMD).(03 February 2014)Read more...
Duchenne MD clinical trial update
Sarepta Therapeutics and Prosensa have both announced news from the clinical trials of exon skipping for Duchenne muscular dystrophy. The trials tested eteplirsen and drisapersen - drugs with the potential to treat around 13 percent of boys with Duchenne muscular dystrophy.(21 January 2014)Read more...
2014 Superhero Day for MD - Registrations now OPEN!
Lock in a date for your 2014 calendar to host an event during Superhero Week* from Monday 1st September – Friday 5th September 2014.
Events can be held at: kindergartens, childcare centres, schools, work places, community clubs, at home or anywhere else you can imagine hosting a Superhero Day occasion.
A fun and imaginative event where by making a donation anyone can dress up as their favourite superhero character or better yet, invent one of their own, to help find a cure for Muscular Dystrophy. Proceeds from the event will be going to support research at the National Muscular Dystrophy Research Centre.
Click on the 'Read more...' link to visit the official event website and download the registration form.(19 December 2013)Read more...
Support an MDA fundraiser by buying Xmas cards and accessories
MDA would like to extend a huge thank you to one of our great supporters and fundraisers Leanne Watson from ‘Phoenix For Fundraising’ who has donated a total of $1,500 to MDA to help support care and research for the MD community over the past year. We thank you Leanne and appreciate your work.
Show your support for Leanne by purchasing some of her amazing cards and accessories, perfect for all your Christmas, New Year and other needs. Click here to visit the ‘Phoenix For Fundraising’ Facebook page. Click here to visit Leanne Watson's Facebook page.
Click on the Read more… link to visit the ‘Phoenix For Fundraising’ website.(18 December 2013)Read more...
Clinical trial of SMT C1100 for Duchenne muscular dystrophy started
Summit, a UK drug company, has announced that a boy with Duchenne muscular dystrophy (DMD) has taken the first dose of SMT C1100 in the phase 1b clinical trial. SMT C1100 is an oral drug designed to increase the amounts of a protein called utrophin in the body. It is thought that utrophin might be able to substitute for the dystrophin that is missing in boys with DMD because the two proteins are very similar.(16 December 2013)Read more...
MDA Harley Raffle No. 55 Winner
MDA Harley Raffle No. 55 Winner
Austral NSW Australia
Ticket No. 3898
Updated Information on Spinal Muscular Atrophy (SMA)
(06 December 2013)Read more...
MDA's Fact Sheet on Spinal Muscular Atrophy (SMA) has been significantly updated. Click on link to read the latest clinical information.
New research grant to test possible MD therapy
Congratulations are in order for the researchers at the National Muscular Dystrophy Research Centre (NMDRC) – they have received a $640,000 grant from the NHMRC to expand their groundbreaking research into muscular dystrophy.(26 November 2013)Read more...
NDIS needs more funds or it risks being a half-baked scheme
“I am not surprised that the NDIS has already blown out by 30 per cent in its first four months of operation as we told anyone that would listen and even advised the Senate Committee that more funds are needed. Otherwise, it risks turning into a half-baked scheme with good intentions on the surface but ultimately not give the help needed to some of the most vulnerable members of our society,” said Muscular Dystrophy Australia’s Executive Director, Boris Struk.
“At this stage the predicted cost for individual plans has averaged more than $10,000 over budget going from an estimated $34,969 to $46,290. Personally, I believe this figure will just increase because the cost of care and equipment for people with a disability is enormous and some families are getting into significant debt just to keep up with the bills,” said Mr Struk.
To view the full media release, click on the 'Read more' link...(21 November 2013)Read more...
Study: MD affects someone’s wellbeing at twice the rate of cancer
“New research has revealed that compared to other health conditions, for a person with MD, more than two disability adjusted life years (DALYs) are lost each year, indicating a substantial loss of wellbeing,” said Muscular Dystrophy Australia’s Executive Director, Boris M Struk.
The research has been published in the new report ‘Economic study of muscular dystrophy’, produced by Deloitte Access and funded by MDA, which is an in-depth look into the financial cost of MD on both individual families and the Australian economy.
To read the full media release click on the 'Read more' link...(07 November 2013)Read more...
InformationMD 2013 Seminar
InformationMD 2013 Seminar
(31 October 2013)Read more...
On Tuesday 29 October MDA hosted its annual InformationMD! seminar at its Head Office in North Melbourne. The all-day event was a great success with the MDA Conference Room packed to capacity with attendees comprising members of the MD community, staff from schools and several service providers.
Introducing Christina Williams - MDA Program Services Coordinator
"Just 3 years ago, I had no idea who I wanted to be or what I wanted to do. I was so uninspired in the work I was doing that I decided it was time for a change. I applied for a one year traineeship at Belmore School; a specialist school for children with physical disabilities and health impairments. Little did I know, this would change my life."
To read Christina's full profile please click on the 'Read More' link...
MDA Friend Raising Evening & Launch of 'Economic Study of MD'
On Thursday, 17 October, Muscular Dystrophy Australia held its annual ‘Friend Raising Evening’ at Crown Entertainment Complex, Melbourne. The event hosted by MDA provided an opportunity to network with an eclectic group of corporate, business and community leaders.
Now more than ever, MDA is seeking to forge strong partnerships with individuals and businesses to help strengthen its ability to provide the best care and service for those in the community living with MD. MDA is grateful for any communication no matter how big or small with all members of society to create a greater friend-base for the organisation.
The Assistant Minister for Social Services, Senator The Hon. Mitch Fifield, was a guest of honour for the evening and also launched the ‘Economic Study of Muscular Dystrophy’. The report, produced by Deloitte Access Economics and funded by MDA, is an updated version of the 2007 pioneering report ‘The Cost of MD’.
Updated Information on Myasthenia Gravis
(23 October 2013)Read more...
MDA's Fact Sheet on Myasthenia Gravis (MG) has been significantly updated. Click on link to read the latest clinical information.
MDA is pleased to introduce our new PA - Lauren Oakley
With the ever increasing demands on compliance, process and management systems, it was evident that MDA required expanding its staff experience base. The attainment of ISO 9001 Certification has added a significant positive boost to the MDA’s credibility however that comes at a cost of regular auditing.
With this in mind, MDA employed Lauren Oakley as Personal Assistant to the Executive Director with the additional role of Internal ISO Auditor. Lauren’s previous experience as Administration Officer at Victoria University (VU) placed her in good stead to meet the demands of the newly created position at MDA.
To read Lauren's full profile please click on the 'Read more' link...
(21 October 2013)Read more...
Take 5 magazine features: MDA Executive Director Boris M Struk
(17 October 2013)Read more...
A double-page article featuring a photo of Boris Struk, his wife Ineke and their son Ryan, has been published in this week's 'Take 5' magazine. In the article Boris talks about the early days of Ryan's diagnosis and his reasons behind the ChallengeMD! event series. Click the 'Read more' section to view a photograph of the article. Full article to be uploaded soon.
Research discovers a promising alternative to steroids for muscular dystrophy
Researchers in the USA have discovered a drug that could replace the corticosteroid drugs such as prednisolone currently used to treat Duchenne MD. In studies in mice the drug – called VBP15 – worked better than prednisolone without the harsh side effects.(30 September 2013)Read more...
Research results released
Disappointing exon skipping trial results released
In a press release GlaxoSmithKline and Prosensa have said that the results of the phase 3 exon skipping trial for Duchenne muscular dystrophy are disappointing. Preliminary results show that at the end of the 48 week trial, treated boys were unable to walk any further in six minutes than boys receiving a placebo.(25 September 2013)Read more...
Diabetes research may help autoimmune disease
Exciting new research may lead to the development of treatments for autoimmune disease which is good news for the approximately 6000 Australians affected by the muscle diseases myasthenia gravis, Guillain-Barre Syndrome and chronic inflammatory demyelinating polyneuropathy (CIDP).(25 September 2013)Read more...
National Superhero Week wraps up.. up.. and away!
Well what a week we had for the inaugural Superhero Day events. We have had so much positive feedback and enthusiasm about the fundraiser it has been amazing. THANK YOU to everyone who participated. On behalf of Muscular Dystrophy Australia and the 1 in 1,000 people affect by MD, we thank you. We are still tallying the total donations but will announce the final figure once it has been reached. If you have any questions or would like to provide some feedback, please call MDA on (03) 9320 9555 or email firstname.lastname@example.org.
To see photos of the events visit the Superhero Day for MD Facebook page by clicking on the 'Read more' link....
"It's not who I am underneath, but what I do that defines me." - Batman(12 September 2013)Read more...
Boris' Brilliant Bike Ride aired on Channel 31 Sat 14 September
A documentary titled ‘Boris' Brilliant Bike Ride’ about MDA’s inaugural ChallengeMD! event held in 2006 throughout Vietnam aired on Saturday 14 September on Channel 31.
ChallengeMD! Vietnam saw riders pedal from Hanoi to Ho Chi Minh City in Vietnam and in total the event raised over $420,000 for the MDA's Programs and Services.
The documentary aired as part of the new series Local Knowledge which started on Saturday 7 September.
To view a short video about the trip click the ‘Read more’ link…(10 September 2013)Read more...
Another clinical trial for Duchenne Muscular Dystrophy has started
Dutch biopharmaceutical company Prosensa has announced the initiation of another exon skipping clinical trial for Duchenne muscular dystrophy (DMD). The potential drug being tested is called ‘PRO053’ and is a ‘molecular patch’ designed skip a portion of the dystrophin gene called ‘exon 53’. It has the potential to treat around eight percent of boys with DMD.
The first patient in the trial has now had his first injection of PRO053. This phase 1/2 clinical trial is designed to assess the safety, effectiveness and tolerability of multiple doses of PRO053 over 48 weeks. They will also study how PRO053 moves through the body for example the rate at which it is absorbed and excreted – this is called the ‘pharmacokinetics’.
To read the full update please click the 'Read more' link to download the full edition of Research News...(09 September 2013)Read more...
ABC Television National News featured Superhero Day for MD
MDA Scientific Communications Officer Kristina Elvidge, and parent of a child with Muscular Dystrophy Clare Mott, were interviewed about the new MDA event 'Superhero Day for Muscular Dystrophy' by ABC National Breakfast news during Superhero Week.
The segment aired around the country on Wednesday 4 September 2013 and was filmed at Wonder Childcare, Avondale Heights VIC.
To watch the full video click on the 'Read more' link...(06 September 2013)Read more...
774 ABC Radio host David Astle interviews MDA Executive Director
On 1 September 2013 MDA Executive Director, Boris Struk, was interviewed live in the studio on 774 ABC Radio.
Boris discusses the new MDA event Superhero Day for Muscular Dystrophy, as well as many other important issues surrounding Muscular Dystrophy.
To listen to the interview click here on the 'Read more' link...
Superhero Day for MD featured on front page of Leader newspaper
Superhero Day for Muscular Dystrophy has been featured on the cover of this week's Moonee Valley Leader newspaper.
The full article appears on page 8.
"All children big and small will get the chance to be superheroes this week.
Wonder Childcare in Avondale Heights is one of many schools, kindergartens and childcare centres getting involved in Superhero Day for Muscular Dystrophy..."
To read the full article, click on the 'Read More' section.
(03 September 2013)Read more...
Mon 2 - Fri 6 September
National Superhero Week starts today! [Monday 2 September]
Where: Nationwide across Australia
When: Superhero Week (Mon 2 – Fri 6 2013)
How: You can get involved by hosting a Superhero Day at your school, workplace or home
Why: All funds raised support vital Muscular Dystrophy research
Every single state and territory across Australia will this week leave their identities at home for the day and come to school, kinder or work dressed as a Superhero to join the fight to find a cure for Muscular Dystrophy.
“We have thousands of people ready to celebrate the event and we are overwhelmed with the amazing reaction we have received from all across Australia. There is such a widespread level of support which spans from a Federal Government Department in SA, to a childcare centre in Wanneroo, WA, to a primary school in the Northern Territory,” said Muscular Dystrophy Australia Executive Director, Boris M Struk.(02 September 2013)Read more...
MDA writes to AFL boss to make donation from Bombers’ $2mil fine
MDA is today sending a personal letter to Andrew Demetriou to urge him to make a donation to Muscular Dystrophy Australia from the $2 million fine lodged against Essendon Football Club for the misuse of banned substances, some of which were associated with Muscular Dystrophy. “We are writing to the AFL’s Chief Executive Officer, Andrew Demetriou, to implore him to make a donation to Muscular Dystrophy Australia to support vital care and research needed for the community which has been dragged into this ordeal,” said Muscular Dystrophy Australia Executive Director, Boris M Struk.
You can show your support by liking the following Facebook petition page:
Click the 'Read More' section to read the full media release...
Adelaide Advertiser newspaper
Superhero Day national media coverage in both online and print
29 August 2013
SUPERHERO DAY FEATURED ON HERALD SUN WEBSITE AND ADELAIDE ADVERTISER NEWSPAPER
MINI superheroes at Dernancourt Primary School are making a herculean effort to support research into muscular dystrophy - a condition that affects one in 1500 South Australians...
Click on the link below to read the full article:(28 August 2013)Read more...
MDA was featured in the Sunday Herald Sun paper 25th August
Muscular Dystrophy Australia's Executive Director, Boris Struk, was featured in the print media Sunday, 25 August 2013.
Sunday Herald Sun newspaper:
An interview with Boris M Struk in the 'Body + Soul' section of the weekend's Sunday Herald Sun newspaper. Boris talks about his trek to Morocco earlier in the year for the 2013 ChallengeMD.
To read the article click on the 'Read More' section.(22 August 2013)Read more...
MDA’s Superhero Day for MD event featured in Herald Sun, page 3
Featured in the most prominent position in today’s edition of the Herald Sun newspaper is Superhero Day for Muscular Dystrophy. A photo taken yesterday at Concord Junior Campus, Watsonia, personifies the true spirit of the event in celebrating everyone’s super powers, especially those of children with Muscular Dystrophy.
“Holy smokes, Batman! Is the Batcave big enough for this lot? Caped Crusaders everywhere are pulling on their boots and donning masks for a good cause. The inaugural Superhero Day for Muscular Dystrophy aims to support research into the condition, which affects one in 1000 Australians…”
Click ‘Read more’ to see the full article.
Duchenne Research Results
Duchenne exon skipping trial results published
The results of Sarepta Therapeutics' clinical trial of eteplirsen have been published in a reputable medical journal. Eteplirsen is a ‘molecular patch’ designed skip a portion of the dystrophin gene called ‘exon 51’. It has the potential to treat around 13 percent of boys with Duchenne muscular dystrophy – those with a mutation in the vicinity of exon 51.
The trial showed that considerable amounts of dystrophin protein were produced in the muscles after 48 weeks of treatment and this stabilized walking ability.(12 August 2013)Read more...
LAST DAY TO REGISTER FOR SUPERHERO DAY FOR MD!
With only two weeks until Superhero Week (Mon 2 – Fri 6 September) registrations close today (Mon 12 Aug) at 5.00pm (EST). Every registration receives a complimentary Superhero Cape along with balloons, posters and other fun things for your event!
Download the Registration Form here:
MDA Superhero Capes are still available! There is no deadline to order the capes but it will take approximately one week for delivery depending on location. Download the Superhero Cape Order Form here:
If you need any additional time to register or would like to find out about Postage and Handling (P&H) costs for the capes, please call MDA on (03) 9320 9555. Click the 'Read More' link to view the Superhero Day for MD Facebook page.(12 August 2013)Read more...
New Fact Sheet
New Fact Sheet on Becker MD (BMD).
There are many types of muscular dystrophy (MD), all are genetic conditions that cause the muscles to weaken and waste away to varying degrees. Becker MD is a milder, more slowly progressing variant of the better known Duchenne type of MD. Read the the new Fact Sheet on BMD.
(08 August 2013)Read more...
Burnt Sugar Research
Burnt Sugar treatment for muscular dystrophy?
You may have seen headlines on the internet about researchers testing a substance found in burnt sugar, beer, cola and some lollies as a treatment for muscular dystrophy. Sounds like a joke doesn’t it?(05 August 2013)Read more...
Purchase an official MDA Superhero Cape now!
Do you want to be a Superhero and support Muscular Dystrophy?
You can now order the 'Official MDA Superhero Capes' to wear during Superhero Week from Monday 2 - Friday 6 September 2013. You can wear them at a Superhero Day event or you can wear them anywhere you like during Superhero Week to help support vital research and raise awareness of MD. They are a great way for everyone to be involved in Superhero Week even if you can't host the event! Capes are $9.95 ea (+ P&H).
To view more photos of the capes visit: www.facebook.com/SuperheroDayMD
Click the 'Read More' link to download the Superhero Cape Order Form.(31 July 2013)Read more...
Clinical Trials: Your questions answered
A clinical trial is a carefully controlled study designed to examine the safety and/or effectiveness of drugs, devices, treatments or preventive measures in humans. Clinical trials follow a strict protocol to ensure that the testing is completed as quickly and safely as possible and accurately answers the questions being asked.(22 July 2013)Read more...
What are patient registries?
(22 July 2013)Read more...
Patient registries are databases that contain information about patients with a particular condition. The registries are then used by clinical trial organisers to contact suitable trial participants and invite them to take part.
'From The Desk of the Executive Director'
ChallengeMD! Morocco 2013 - Mt Toubkal assaulted me! Every step was painful, through rock and scree - two steps forwards and half a step back. Did I feel like giving up - quitting? Absolutely!!!!!!
More recently, we saw another example of spin doctors touting breakthroughs for MD without citing credible scientific journals where the veracity of that science had been published and subjected to peer review. The telling and final sentence advised that this particular institution was in need of $180 million to build a new research facility. A nice segue from a “breakthrough” to “we need $180 million”.
MDA appoints a scientific communications specialist
MDA expands its communications capability with the appointment of Kristina Elvidge PhD as its Scientific Communications Officer.
MDA’s Scientific Communications Officer, the first such role in Australia for MDA, we will ensure that the level, quality and accuracy of information disseminated shall be of the highest possible standard.
(21 July 2013)Read more...
Superheroes to take over schools across Australia for a good cause
The first week of September this year will see primary schools and childcare centres all over Australia overrun with mini-superheroes to celebrate the inaugural charity event ‘Superhero Day for Muscular Dystrophy’.
This brand new event sweeping the nation asks children to discover their own super powers and come to school dressed up as their favourite superhero or better yet, invent one. It requests that they bring a gold coin donation to fund research to find a cure for Muscular Dystrophy (MD) with all proceeds going to support research at the National Muscular Dystrophy Research Centre. Businesses are also able to host the event by having staff dress up and have customers make gold coin donations.
View full media release by clicking on the link: "Read more..."
18% of disabled people had no social contact in last 3 months
(12 July 2013)Read more...
The heartbreaking truth is that people who have a disability, such as muscular dystrophy, are often socially isolated and can go months on end without a friendly visit because it is too physically difficult to leave the house,” said Muscular Dystrophy Australia’s Executive Director, Boris M Struk.
A recent paper released by the Productivity Commission ‘Deep and Persistent Disadvantage in Australia’ found that 13% of people with a disability have experienced deep social exclusion.
The paper also found that around 18 per cent of people with profound limitations, such as a disability, had not had any social contact in the last three months and 59 per cent had not had a telephone call for that same period.
Click 'Read more...' to view the full media release.
Need to hurry! Only 1 month left to register for Superhero Day
There is only one month left to register to host a Superhero Day on any day in the first week of September 2013 with registrations closing on 12 August 2013. You can register any primary school, kindergarten, childcare centre or business from anywhere around Australia to participate.
You can download the Registration Form from the official Superhero Day for Muscular Dystrophy event website: www.superherodaymd.com.Or click on the 'Read More' section below.
You can also visit the Facebook page at: www.facebook.com/SuperheroDayMD
If you would like more information on Superhero Day or to register please call MDA Public Relations Manager, Courtney Burger, on (03) 9320 9555 or email email@example.com.
(08 July 2013)Read more...
MDA Harley Raffle No. 54
MDA Harley Raffle No. 54 Winner
Sebastopol VIC Australia
Ticket No. 7733
Muscular Dystrophy Australia is now ISO 9001 Certified
Muscular Dystrophy Australia (MDA) has recently attained ISO 9001 accreditation from the International Organization for Standardization. This is a huge achievement which places MDA in a superior position in comparison to many other not-for-profit organisations. An ISO 9001 Quality Management System (QMS) offers a comprehensive framework on which to build processes that help ensure key business objectives are achieved and the standard has received widespread international recognition.(25 June 2013)Read more...
The official Superhero Day for MD website has been launched
The official Superhero Day for Muscular Dystrophy event website has been launched today at www.SuperHeroDayMD.com.
From the website you can download the Registration Form. Additional features such as a 'Donations' page will be coming soon.
You can also visit the Facebook page at: www.facebook.com/SuperheroDayMD
If you would like more information on Superhero Day or to register please call MDA Public Relations Manager, Courtney Burger, on (03) 9320 9555 or email firstname.lastname@example.org.
(12 June 2013)Read more...
ChallengeMD! Morocco trek raised more than $100,000 for MD
Over the weekend a group of exhausted yet triumphant charity trekkers returned to Melbourne from Morocco with a total tally of more than $100,000 raised for Muscular Dystrophy care and research.
The grueling 8-day trek took the group to the top of Mount Toubkal in North Africa which is 4,167 metres tall meaning it is almost twice as high as Australia’s Mount Kosciuszko and the entire adventure was organised and led by Muscular Dystrophy Australia’s Executive Director, Boris M Struk.
To download the full media release please click on the ‘Read more’ link below...
'From The Desk of the Executive Director'
Watching the installation of our historic campaign billboard in the Café MD area by the expert crew from Signcraft, provided an opportunity for me to reminisce and reflect over this first major foray into promoting MD to the masses.
Also...The tough road ahead!
By the time you read this, together with a dedicated team of trekkers, I will be most likely half way up Mt Toubkal in the Atlas Mountains in ChallengeMD! 2013 Morocco. Through these challenges commencing with the historic cycle from North to South Vietnam in 2006, we have raised more than $2 million for MD.
Team MDA has completed the 2013 ChallengeMD! Morocco trek
Congratulations to Team MDA for completing the 2013 ChallengeMD! Morocco trek. In total the event has raised more than $100,000 to go towards future research and also care for those in our community affected by Muscular Dystrophy. If you would like to give a donation to the Team you are still able to by visiting the ‘Sponsor a Trekker’ page on the ChallengeMD! website.
To read all about their adventure please click on the ‘Read more’ link below…
New face of the 2013 White Pages is MDA Executive Boris M Struk
MDA Executive Director, Boris M Struk, has been featured on the front cover of this year's White Pages, soon to be hitting your doorstop.
Mr Struk was chosen as the new face of the White Pages as part of the Keeping Our Communities Healthy campaign, which recognises the selfless Australians who go above and beyond to improve the quality of life for locals in their area.
Each year, Sensis®, the publisher of the White Pages®, recognises the efforts of local people in their communities by celebrating their achievements on the cover of its books.
Click below to see the full front cover...
Media: Boris M Struk featured in Hume Leader newspaper
MDA Executive Director, Boris M Struk, was featured in today's edition of the Hume Leader newspaper. The article titled 'Shrugging off adversity' highlights Boris' reasons behind his trek the to tallest mountain in North Africa, departing this Friday 3 May 2013. His ultimate goal is to raise much needed funding for Muscular Dystrophy Australia.(30 April 2013)Read more...
Add Muscular Dystrophy Australia on Facebook!
Muscular Dystrophy Australia has a Facebook friends page and we would love for you to add us. We continually update the page on a daily basis with information on everything from upcoming events, media coverage, photos, Muscular Dystrophy news and other interesting information.
To all of our newest friends we thank you for supporting us and within just two months we have doubled our contact list with now over 1,100 people. We aim to have 5,000 friends by 2014 therefore we need your help and support to do this. Click on the 'Read more' link below...(26 April 2013)Read more...
Harley Raffle 54
MDA Launches Harley Raffle 54
The MDA's 54th Harley Raffle is a 2013 Fat Boy. This will be another "sell out" so be quick in placing your order today!(17 April 2013)Read more...
Media: Drawing the line the tough part of disability services
Article in The Australian commenting on NDIS and disability services(16 April 2013)Read more...
Bob Katter's footballer tax breaks are misguided and outrage the disabled community...
MP Bob Katter has really lost touch with reality this time if he thinks giving footballer players a tax break is high on the agenda of the Australian public. His focus needs to turn to those in our community who are in need rather than those who are put on a pedestal,” said Muscular Dystrophy Australia Executive Director, Boris M Struk.(27 March 2013)Read more...
Signcraft's Donation - A sign of a great company…
A cockatoo feeding frenzy soon destroyed the MDA's building signage. Signcraft comes to the rescue. Read how by clicking below...(20 March 2013)Read more...
4000km’s across The Indian Subcontinent. One 7hp Rickshaw, two adventurers with just two weeks to compete, complete and survive…
All in the name of Muscular Dystrophy...(08 March 2013)Read more...
Vino, Pasta & Dolci while Finding Valentino ...
Close to two hundred people attended last weekend’s Finding Valentino Luncheon hosted by MDA’s Dystrophy Divas, raising more than $12,000 for MDA.
2013 'YPA - Run for Strength' proved to be the most successful event yet with more than 1,100 participants
Albert Park was abuzz with people from all stages of life from little children excited to be out with the family, serious athletes ready to race and groups of women in their 80s who lapped up the opportunity to enjoy a nice walk around the lake on such a beautiful day.
(27 February 2013)Read more...
Launch of a New Service - for everybody, not just the MD Community...
eMDA! or Emergency Medical Details Alert is something you should never leave home without.
A credit card size USB device which holds all your emergency contact details, medical history and medications you may be using, which would be of immense value in the event of an accident or illness while you are away from home.
Your emergency and medical details can be entered on the provided PDF form with editable fields. You determine how much information you want to include on this form.(15 December 2012)Read more...
Winner Harley Raffle #53
Long-time supporter of MDA is a Winner with Harley Raffle #53
Sometimes good people win!
This is the case with Ross D. from Gladstone in Queensland. Ross has been purchasing tickets in MDA's Harley Raffles since Raffle No. 2. Ross is one of our longest supporters. Ross' Ticket No. 3978 was drawn from the barrel and he is now the proud owner of a brand new Fat Boy and in time for Christmas. Ross, "Thanks" for your long-time support of MDA.
DMD Research Project - Diagnosis experience and views on testing in the future
Researchers at the Murdoch Children's Research Institue (MCRI) have developed a survey for family members of individuals with Duchenne Muscular Dystrophy (DMD) and are seeking their participation in a new and exciting project. The project is funded by the MCRI and Muscular Dystrophy Australia.(19 November 2012)Read more...
Launch of New Association serving the Canberra ACT community - MDACTion
(19 July 2012)Read more...
Harley Raffle 53
MDA Launches Harley Raffle 53
The 53rd Harley Raffle is a 2012 Fat Boy. This will be another "sell out" so be quick in placing your order today!(13 July 2012)Read more...
MDA announces - ChallengeMD! Morocco 2013
This is the next major event for the MDA which will now see Trekkers undertake perhaps the most gruelling challenge to-date for Muscular Dystrophy.
More than $2 million has been raised since ChallengeMD! Vietnam 2006.
Read all about it by following the link and learn how you can participate as a Trekker or Sponsor and Help Fight Muscular Dystrophy!(09 July 2012)Read more...
MDA Trivia Night
Wednesday 25th July 2012. North Melbourne Town Hall.
Come along for a night of fun and frivolity while helping to support the MDA.(30 June 2012)Read more...
MDA Harley Raffle 52
Long-time supporter of MDA is a Winner with Harley Raffle #52
Sometimes good people win!
This is the case with Amanda (Mandy) from Mackay in Queensland. Mandy has been purchasing tickets in MDA's Harley Raffles since Raffle No. 35. It was with the greatest of pleasure that MDA rang Mandy to advise her that Ticket No. 2705 was drawn from the barrel and she is now the proud owner of a barnd new Fat Boy. "Thanks" for your long-time support of MDA, Mandy.
MDA Executive Director's blog
'From The Desk' - False Prophets
These peddlers or false prophets, build up artificial hope, invariably fleece or con tens of thousands of dollars for miracle cures and cause so much harm in a soul-destroying way when the cure does not work.
Any information claiming 'cure' from non-accredited sources should be read with a bag-full of salt.
Melbourne Cup - Americain - visits MDA
Americain, was the 2010 Melbourne Cup winner. Part owner, Colleen Bamford recently visited the MDA with the Melbourne Cup, Americain's jockey silks and winners sash.MDA Staff and Futures participants had first hand experience with the Melbourne Cup and memorabilia.
The MDA's annual information seminar InformationMD! 2012 will be conducted on Wednesday 25th and Thursday 26h October 2012 in the MDA Conference Centre in North Melbourne.
Program details to follow...
Boxing Legend calls for Community Support in the Fight against Muscular Dystrophy
Former boxing legend Barry Michael will make an exclusive appearance at the Muscular Dystrophy Association’s (MDA) Friend Raising Evening at the Crown Entertainment Complex on Wednesday 20th June..(06 June 2012)Read more...
An international team led by the University of Melbourne has found that increasing a specific protein in muscles could help treat Duchenne muscular dystrophy.(15 May 2012)Read more...
Muscular Dystrophy featured at Flemington VRC - Charity Raceday
MDA receives signifiacnt profile on course at the prestigious Flemington Racecourse. MDA Members, donors, supporters and members of the general public heard all about MDA, its programs and services with live interviews broadcast on-course and full page editorial in the day's race program.
Victoria Police Detective Training School Supports MD
The Centre for Investigator Training, Detective Training School Course 228 B was pleased to present MDA Client Services Manager Marie Fleming with the product of their class investigation...(29 March 2012)Read more...
MD Education Seminar! 2012
MD Education Seminar 2012 - a comprehensive multidisciplinary seminar, presented the latest and up to date information for anyone involved with students in the education system who are affected by Muscular Dystrophy.(24 March 2012)Read more...
All Aboard - Accessible Journeys Everywhere
All Aboard wants all buses, trains and trams, supporting infrastructure and service information to include the needs of all Victorians. Universal access is a human right and we need action NOW from Government and transport operators to ensure that we are all aboard.(13 February 2012)Read more...
Harley Raffle 52
MDA Launches Harley Raffle 52
The 52nd Harley Raffle is a 2012 Fat Boy. This will be another "sell out" so be quick in placing your order today!(25 January 2012)Read more...
MDA Annual Christmas Party
The Annual MDA Christmas Party. Santa's Christmas Spectacular was a huge hit with family and friend. See pics from the day below...
"From The Desk" - Donor Fatigue - We Can Fight It!!
You all know about driver fatigue and the physical manifestations connected to it.
All the warning signs are there with driver fatigue… the heavy eyes, your wits are sluggish and that overwhelming sensation of tiredness engulfs you.
Donor fatigue is not much different to this.
For us humble charities, we are experiencing the worst donor fatigue I have seen, in more than 25 years of my involvement with MDA.
Australian charities fear donor fatigue amid mounting natural disasters around the world this year.
ChallengeMD! 2011 Mongol Rally - Half-way point reached...
Leon M Struk and Ian Casey, TeamMDA have reached the hal-way point in their epic charity journey. Pictures and real-time GPS of their journey accessed below...(20 August 2011)Read more...
Senator Launches New MD Website
Senator the Hon Jan McLucas, Parliamentary Secretary for Disabilities & Carers, Launches New Australian Website To Help Manage Duchenne Muscular Dystrophy
Launching the website at Muscular Dystrophy Australia’s headquarters in Melbourne today, Parliamentary Secretary for Disabilities and Carers Senator Jan McLucas said the Australian Government-funded portal will, for the first time, enable information about Duchenne Muscular Dystrophy to be available from one location.
(11 August 2011)Read more...
ChallengeMD! 2011 Mt Blanc
Seventeen Trekkers return triumphant, conquering Mt Blanc – covering more than 190km through three countries and ascending more than 9,000 meters and raising $200,000 for MD Research.
(02 August 2011)Read more...
General Motors - Commodore Missions
Muscular Dystrophy Association (MDA) will receive a loan of a Holden Commodore today as part of Commodore Missions, a program designed to thank the wider community for making Commodore Australia’s best-selling car for 15 years.(31 July 2011)Read more...
Aussie Farmers Direct Supporting MDA!
See how to get the best produce and support MDA at the same time...(31 July 2011)Read more...
Winter Nights In...
Want a way to distract yourself in the winter months, whilst supporting a good cause?
(31 July 2011)Read more...
Trivia Night ChallengeMD! 2011 Mongol Rally
Friday night saw the MDA Conference room packed to the rafters with more than 140 participants in the Trivia Night. A huge success read more about it...(22 June 2011)Read more...
MDA Harley 50
Long-time supporter of MDA is a Winner!
Sometimes good people win!
This is the case with James M. of Wabell Heights in Queensland. James has been purchasing tickets in MDA's Harley Raffles since Raffle No. 1. It was with the greatest of pleasure that MDA rang James to advise him that his Ticket No. 12770 was drawn from the barrel andhe is now the proud owner of a 2011 Fat Boy. "Thanks" for your long-time support of MDA, James.
ChallengeMD! 2011 Mongol Rally - Team MDA
15,000 kilometers of desert, mountains, dirt tracks and bandits in a tiny car.. that's the adventure Melbourne based aircraft engineer and photographer Leon M Struk (33) along with Irish born, San Francisco based business executive Ian Casey (38) will be heading off in late July in a bid to raise much needed funds for Muscular Dystrophy Australia.
(15 May 2011)Read more...
ChallengeMD! 2011 Mt Blanc Sponsor a Trekker
Seventeen Trekkers have committed to Fight for MD while undertaking the arduous task of Trekking around Europe's tallest mountain, Mt Blanc. Help them to raise the essential research dollars by sponsoring their efforts.
With less than two months before the Team heads off, now is the time to sponmsor a Trekker and take advantage of a financial year end tax break.
Follow the link to sponsor a Trekker...
(01 April 2011)Read more...
Research & Information Session - Geelong
Dr. Jason White of the National Muscular Dystrophy Research Centre will give a talk on: What research is being done to increase knowledge around Muscular Dystrophy, Medical advances that are on the horizon for better diagnosis and management of MD; and What research might bring to in the future to the MD community...(16 March 2011)Read more...
On Sunday, 17 July 2011, Run Melbourne, presented by The Age will be held once again, offering participants a half marathon, a 10km run and a 5km run or walk starting and finishing at Federation Square. New in 2011, is the free Run Melbourne health and fitness expo (Thursday, 14 July - Saturday, 16 July) and a 3km Kids Event (Saturday, 16 January). We look forward to seeing you at the start line.
Click on link to go to Sponsorship Page to support MDA.(07 March 2011)Read more...
MDA Clinic Opening
MDA Neuromuscular Clinic Opening
An Australian first, one-stop clinic for neuromuscular disorders that is dramatically reducing the number of visits families make to The Royal Children’s Hospital (RCH) was officially launched by Hon Bill Shorten MP, Parliamentary Secretary for Disability and Children’s Services.(13 June 2010)Read more...
Pride of Australia
MDA Executive Director - Boris M Struk's contribution to the MD Community recognised
Boris was a standout winner who has shown enormous dedication to raising awareness and crucial funding for muscular dystrophy in Australia.” said Peter Blunden, Managing Director Herald & Weekly Times.(08 July 2009)Read more...
To read about this, click on the pic or here.
Muscular Dystrophy Limited
111 Boundary Road North Melbourne VIC 3051
Phone +61 3 9320 9555
Fax+61 3 9320 9595
ACN 122 847 161
Muscular Dystrophy Association Inc
111 Boundary Road North Melbourne VIC 3051
Phone +61 3 9320 9555
Fax+61 3 9320 9595
ABN & DGR 33 376 893 530 Assoc Reg No. A 14397Z
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