Muscular Dystrophy as an organisation was established in 1984 as a support group for individuals and families affected by Muscular Dystrophy (MD). MDA is unique in its offerings in that:
- MDA represents and cares for those living with all of the 60 different types of Muscular Dystrophies, servicing the 1 in 625 men, woman and children in Australia living with MD.
- MDA have two pillars of focus; research and respite/quality-of-life programs and has raised over $43 million dollars in funding for MD.
- Research: MDA is one of the biggest donors to the Murdoch Children’s Research Institute (MCRI) where the National Muscular Dystrophy Research Centre (NMDRC) is located and where we sponsor a dedicated team of scientists and neurologists who are working towards timely treatments, and ultimately a cure, for MD.
- Respite/Quality-of-life Programs: MDA has a very strong commitment to “quality-of-life” and respite programs and developed the national CampMDA program in 1988. In 2015 MDA celebrated its 100th camp and has provided in excess of one million hours of care and support for people with MD.
History of MDA
Executive Director Boris M Struk founded MDA over 30 years ago, after discovering his youngest son Ryan had the muscle destroying disorder. The organisational growth of MDA has been proportional to the societal need to provide research, relevant support programs, services and information to the MD and wider community.
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 constituted as the Muscular Dystrophy Association of Victoria under the Associations Incorporation Act.
Executive Director, Boris M Struk, himself the parent of a son affected by MD, has overseen the development of the organisation 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 on, in Ascot Val, 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 a long 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 as well as forging strong relationships with people overseas affected by MD. We are not an organization that believes in geographic boundaries and are proud to provide an outreach service to people who need our help and advice, wherever they may live.”
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.
It was this very philosophy that saw the Muscular Dystrophy Association adopt the name Muscular Dystrophy Australia on the August 14, 2000. And so we became the organisation we are today, providing thousands of hours of support and program delivery nationally.
MDA’s Contributions to Research
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 MDA 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 December 9, 1993 the Minister for Health, The Hon. Marie Tehan and MDA Member Ryan 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 MDA 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. MDA and MNRI played a pivotal role in developing the Scientific Program and sponsorship for this event.
Almost 10 years to the day that the MNRI was officially opened it undertook a significant change. Following extensive discussion, strategy meetings, planning and finally execution, the MNRI took on a new life as the National Muscular Dystrophy Research Centre (NMDRC).
So we have come a long way since “orange crate days” to an organisation delivering hundreds of thousands of hours of support, and striving to provide hope and support for the MD community. .