From the Desk
“…you can’t please all of the people all of the time”.
“You can please some of the people all of the time, you can please all of the people some of the time, but you can’t please all of the people all of the time” - Poet John Lydgate, later adapted by President Abraham Lincoln
Why do I start my ‘From the Desk’ with this quote?
At MDA we continually strive to be the best we possibly can in all we do, from funding research and clinical services, delivering programs, services, advice and generating awareness of MD.
MDA has grown from the ‘orange crate days’ three decades ago and yes, many of you have read this already and are aware of our humble embryonic days. Today, we are one of few organisations having attained ISO 9001:2008 Certification. What does that mean?
The process is exhaustive, thorough and leaves no stone unturned to ensure we apply best practice, in accordance with strict ISO guidelines in the management and conduct of our operations. There are several levels of certification we could have adopted, but to ensure the utmost in transparency and to ensure if questioned, we have complied with the highest level of scrutiny possible.
MDA as an organisation is reliable, robust and reputable.
Boris M Struk
September 14th 2015
I’m also proud to report that our financial records are audited to the highest standard and to date our reports have been fully unqualified. By way of explanation, a ‘qualified’ report would indicate areas of possible concern, whereas an ‘unqualified’ report advises that there are no concerns or issues whatsoever.
Take for example ‘client services’ with an expenditure of approximately $100,000. Obviously we spend considerably more than this on client services. This figure DOES NOT include the five staff members’ salaries in the client services department dedicated solely in support of the MD community.
The five staff members sole task is to work directly with and on behalf of members of the MD community, providing advice, information at time of diagnosis, assistance in lobbying schools and where required workplaces, education, conducting weekend and longer-term respite programs and many other services. One important service is our welfare call program. Many of you would have received a call from our client liaison officer on a regular basis, asking if all is well, if there are any issues or concerns we could address and providing that shoulder of support and a friendly ear. This is the client liaison officer's sole task. For example, in the 12 month period to September 2015 she contacted 550 people being members of the MD community.
On the clinical front, MDA provides the essential funding which enables the RCH Department of Neurology to employ a dedicated MDA Neuromuscular Nurse Coordinator. Her role is to look after the efficient attendance of 'Muscle Clinic' at RCH. What previously took several visits over a protracted period of time to see all specialists is now coordinated to occur on the one day. According to many parents, this service is worth its weight in gold - and would not be possible without MDA's valuable support.
Several years ago MDA moved its research team to the Murdoch Children's Research Institute (MCRI) and a number of you have participated in tours of the facility. MDA's contribution to research is for 'today and the future'. By providing funding for PhD Scholarships, up to five in any one year, we are ensuring the availability of a steady growth in the number of scientists working on a timely solution. MDA also supplements the funds for the Senior Scientist in the Team. Of course equipment purchases are required from time-to-time. The last item of laboratory equipment purchased cost the MDA $70,000. In term of research expenditure MDA is batting above its weight, but when compared with major overseas laboratories we are still relatively small-time.
Who would have thought, back in those humble orange crate beginnings, that we would now be celebrating our 100th CampMDA (September 27, 2015)?
The statistics for this are quite extraordinary.
MDA has fully-funded student placements from the early days of CampMDA. These students perform a valuable function in supporting their respective camper for the week and the training MDA provides significant benefits to the hospital, medical and paramedical system.
In one instance, one of our physio students attending CampMDA was later involved in the treatment of my son (Ryan) when he was admitted to hospital with pneumonia. She just happened to be his carer four years earlier at camp. The knowledge and experience gained saw Ryan discharged from hospital four days earlier with a conservative cost saving to the state health system of about $12,000-14,000. Not a bad return with MDA investing about $1,000 in training these carers at CampMDA.
So the 100th CampMDA is a free service to all campers and carers with a total budget of about $45,000-$50,000. The NAB has generously sponsored part of the camp with a $30,000 donation. MDA is meeting the balance from its fundraising campaigns, including Superhero Day, Harley Raffle and other events. The 100th CampMDA is attracting people all the way from Queensland, NSW, Tasmania and of course Victoria. This is an amazing achievement for MDA and testimony to the fact this service is needed and supported.
Talking about Superhero Day, what an amazing response we’ve had this year. More than 250 organisations registered with more than 25,000 participants. Pre-schools, kinders, schools, business and corporates registered.
An advertising campaign featuring boys with MD, portrayed as superheroes, was developed in 2000. There was extensive consultation and market research, involving focus groups which included people with muscular dystrophy and dads who saw their sons as the real super heroes.
Since then, MDA has distributed several hundred thousand impressions of this campaign. It ran in magazines, TV, radio and online. Drawing the parallel of Kryptonite’s effect on Superman to MD has formed part of our presentations to schools, service clubs and other opportunities. Explaining what MD is and what effect it has on muscles can be difficult for some people to comprehend, however when citing the example of Kryptonite, there’s an almost immediate ‘lights on’ moment when people realise just what a powerful effect MD has on the individual.
In fact, the response to the campaign to date has been overwhelmingly positive. Most recently, MDA received a request for more posters from a mother of a child in QLD with MD. She felt it was a powerful message that resonated well with her.
I’m curious if the MD community finds this reference to Kryptonite and MD at odds with contemporary thinking. To date we have only received one complaint about this and do not want to discount the feelings of the individual.
In light of this, perhaps President Lincoln’s quote is relevant to MDA's efforts to raise awareness about muscular dystrophy.
So, like Superman powering skyward, it’s onward and upward for the Fight Muscular Dystrophy campaign.
Until next time,
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