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“From an Orange Crate”


 

Although Duchenne Muscular Dystrophy was clinically described in the mid 1800’s, the knowledge and medical understanding of the disorder developed slowly, resulting in a sluggish progression of support services and research funding.

World-wide, many organisations supporting the needs of families and individuals developed progressively from the 1950s. The Muscular Dystrophy Association (MDA) has played a pivotal role in establishing organisations to support the MD community domestically and overseas.

The roots of MDA can be traced back to the mid 1970’s, initially functioning as a small not-for-profit agency. In June 1984 it reached formal status when it was officially certified as the Muscular Dystrophy Association of Victoria (MDAV) Incorporation Certificate A1497

Executive Director, Boris M Struk, himself the parent of a son affected by MD, has been largely responsible for building the organization from a small entity to an organization that today reaches people globally.

“My son Ryan has been the catalyst for the growth and achievement of MDA. I recall my first day on the job as a volunteer, walking into a small office we had just taken out a six year lease, in Ascot Vale, a suburb of Melbourne. The enormity of the task ahead quickly struck me when all I could find for a chair was an old orange crate. But we have come along way since then, building a team of dedicated staff and volunteers who can be proud of the achievements we have made in recent years. Today we are providing many valuable services to thousands of Australians, and we are also rapidly forging strong relationships with people overseas affected by MD. We are not an organization that believes in geographic boundaries and are very happy to provide an outreach service to people who need our help and advice, wherever they may live."

(Boris M Struk, Executive Director, MDA)

In 1987 scientists managed to isolate the Dystrophin gene. This great discovery offered enormous potential for advances in MD treatment “within several years”. Recognising the likelihood of early research advances, the MDAV had the vision to ensure the future availability of research funds and as a consequence, established the Muscular Dystrophy Research Foundation in 1985, two years before scientists isolated the gene.

Together with Professor Ed Byrne and Dr Lawrie Austin, Boris M Struk set about the significant task of establishing a dedicated MD research facility.

On 9th December 1993 the Minister for Health, The Hon. Marie Tehan and MDA Member Ryan Struk, the son of Boris M Struk, officiated at the opening of the Melbourne Neuromuscular Research Centre. Shortly after, the Centre attained Institute status and became the Melbourne Neuromuscular Research Institute (MNRI). This was achieved in collaboration with St.Vincent’s Hospital and the Department of Medicine, University of Melbourne.

The MDAV and MNRI continued to play an active role in research and as a result a number of Scientific Research Seminars and conferences had been sponsored. In 1994 a Satellite Conference to the VII International Congress on Neuromuscular Disorders - Kyoto Japan was hosted in Melbourne. The quadrennial conference was brought to Adelaide Australia in 1998.  The MDA & MNRI played a pivotal role in developing the Scientific Program and sponsorship for this event.

In keeping with the significant evolution of the MDAV, on the 2nd April 1996 the Association’s name was changed to Muscular Dystrophy Association Inc (MDA). The Incorporation Certificate A1497Z and ABN 33 376 893 530

The MDA has a very strong commitment to "quality-of-life" programs, and developed the CampMDA program in 1988. National CampMDA has attracted participants from every State and Territory in Australia including campers from overseas. To date over 1,100 tertiary education students have been trained at CampMDA with the delivery by MDA of over 125,333 hours of Education & Training and over 200,319 program hours have been delivered at CampMDA resulting in the provision of 483,422 hours of respite. In July 2010 the 78th National Camp MDA was held for children and adults with a neuromuscular disorder.

All this is from an organisation that began with an orange crate for an office chair.

The MDA also runs extensive information provision programs with world-wide links to research centers and MDAs around the globe. This information is available at our MD Centre or from our web site The Home of MDA - the first official website in the world dedicated to MD. We have received over 15 million visitors to The Home of MDA since inception. The MDA has always adopted the philosophy demonstrated by that wonderful organisation Médecins Sans Frontières. (Doctors without Borders). After all, if you are a “member of the MD Community” you should be in a position to receive timely information and support within a caring environment regardless of where you live.

Sans Frontières

It was this very philosophy that saw the Muscular Dystrophy Association adopt the name Muscular Dystrophy Australia on the 14th August 2000 with the ABN 094 123 627. We became an organisation which has provided tens of thousands of hours of support and program delivery nationally.

MDA Logo

With the creation of the new Muscular Dystrophy Australia entity the MDA embarked on a rebranding of the organisation with a new logo. The MDA logo comprises three elements. The first impression is that of a styalised individual. When you look further it soon becomes obvious that the shape of the "arms and legs" look very similar to a medical representation of muscle. Finally, the double strand of the "arms and legs" represents the double helix of DNA.

Almost 10 years to the day that the Melbourne Neuromuscular Research Institute (MNRI) was officially opened it undertook another significant metamorphosis.

Following extensive discussion, strategy meetings, planning and finally execution, the MNRI took on a new life as the National Muscular Dystrophy Research Centre.

The original partners comprising the MNRI were St.Vincent’s Hospital, The University of Melbourne and the MDA. This relationship has endured and provided a solid platform from which the MNRI was nurtured and was able to grow to an Institute providing a considerable level of scientific contribution to the international quest for a timely solution.

The MDA and St.Vincent’s Hospital retain their strong support and sponsorship of the National Muscular Dystrophy Research Centre with a new major partner – The Howard Florey Institute (HFI). The NMDRC is now a wholly owned subsidiary of The Florey, an Institute which for the past several years has worked toward being the preeminent Neuroscience Institute in Australia. With the move of several large research teams with significant interests in Neuroscience to The Florey, critical mass has certainly been achieved.

The synergies between The Florey, the National Muscular Dystrophy Research Centre and the MDA have been further reinforced with the appointment of Boris M Struk to the Board of the Howard Florey Institute. Boris is also the Director - Business Affairs of the NMDRC.

In keeping with this “borderless” philosophy of caring for a community no matter where the individual or family was living, on the 24th November 2006, we adopted a new name for the fight ahead – Muscular Dystrophy Limited - ACN 122 847 161. Today we operate under the broad umbrella of Muscular Dystrophy.

MD retains the International Trademark represented by the Logo and the words "Muscular Dystrophy Australia". MD will go to great lengths to protect this Trademark and the goodwill associated with the name Muscular Dystrophy Australia, which has become synonymous with being a lead agency in the provision of extensive services aimed at supporting the individual and family unit affected by Muscular Dystrophy over a number of years. In addition to the significant support of clinical and scientific research aimed at contributing to the international pool of knowledge, again to benefit the global MD community.

So we have come a long way since those embryonic "orange crate days" of Muscular Dystrophy Association of Victoria to an organisation delivering hundreds of thousands of hours of support, and striving to provide best practice in a similar vein Sans Frontières - Muscular Dystrophy!

 


 

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