From the Desk – October 2014
In September, a momentous milestone will be reached for not only MDA but the wider MD community when we celebrate the 100th CampMDA. I could not be more proud of what these camps have achieved and provided for our members and families.
More than 30 years ago, we set out with a goal to provide respite for people living with MD and also a break for their primary carers. To see what an institution CampMDA has evolved into today for the community is truly gratifying.
CampMDA is a cornerstone service that we at MDA provide to those in the MD community. It provides more than 14,000 hours of respite every year to families. These camps are part of the framework where we focus our resources to provide services to make a difference to families today. Of course we have a very strong focus on research as we are the major sponsor of the National Muscular Dystrophy Research Centre (NMDRC) but we also understand the need to support those currently living with MD to ensure they have quality of life.
This is really what CampMDA is all about – giving our members a fun week to take their mind off such a serious condition. To see all of their smiling faces and hearing the cackle of laughs all day long really makes it all worthwhile. It is about providing a fun place where children and adults with MD can come and relax and have a wonderful time socialising and participating in exciting activities. At the same time it also allows a break for the primary carers as it gives them some time to recharge their batteries and unwind while they know their loved one is being taken care of at CampMDA.
To commemorate the occasion we are hosting a bigger than Ben Hur Open Day celebration on the first day of camp, Sunday 27 September, at Bacchus March, Victoria. All past and present members are invited, as well as anyone who has helped at the camps over the years, including carers or volunteers; or those who want to come and check out what camp is all about. More the merrier, so make sure you lock the date into your diary! There will be a thunderous visit from the Harley-Davidson Owners Group, a mesmerising performance by the Royal Australian Air Force Band and a free BBQ lunch, as well as some other exciting surprises we have in store.
Boris M Struk
October 8th 2014
It makes me feel nostalgic looking back on where this camp first started and how the landscape of the community has changed from then to now. There has always been a great need for respite and these camps have serviced that desire above and beyond what was expected, but what we are finding now is that people are moving away from the regular, shorter respite services offered like OperationMD ShortBreak or OperationMD SWAP.
The changing paradigm of self-managed funding has seen MDA receive fewer requests for shorter respite activities and even in some cases we have been unable to achieve numbers and subsequently postponed or even cancelled plans.
However, the demand for the week-long camps held four times a year is as high as ever.
But to ensure we are meeting the changing needs, we are in the process of reassessing our activities to align them more closely to that changing paradigm affecting the MD community.
To date, MDA has provided 382,174 hours of program activity and 1.3 million hours of respite to parents and primary carers. As well as training to more than 5,500 nursing, OT and physio students spanning in excess of 225,000 hours of education and training provided by MDA.
Watch this space for the next iteration and evolution of MDA’s programs and services.
Until next time,