From the Desk – June 2004

It’s been a while since the last installment to From the Desk. Almost a year in fact, and a busy one at that. For MDA, the last year has seen the achievement of several significant objectives… the creation of the National Muscular Dystrophy Research Centre (NMDRC), new premises and new additions to the MDA Team.

The opening of the NMDRC marked a new era for the MDA in terms of MD research and has paved the way in realizing the full potential in credible, internationally recognised translational research. A summary of the NMDRC’s current research projects can be located at

Our move to the new “Home of MDA” the MDA Centre in North Melbourne, has proved to be a good one. With the final touches to the Centre finished over the last couple of months, our new seminar and meeting facility upstairs is now fully operational. The first seminar held in the new facility, Information-MD! 2004, was hosted in March and a resounding success.

The completion of the new seminar facility, and the appointment of Rayleen Jones as Client Services Manager, has enabled us to ramp up our group meetings, seminars and information sessions.

Boris M Struk

June 2004

National Camp MDA in September drew attendees from around Australia and a good time was had by all. We have included several new sites for Camp MDA and these have worked exceptionally well. The program is recognised by government and members of the MD community for its uniqueness and quality of service. The MDA has conducted 57 camps to date.

It is no surprise that we rely on the generosity of the wider community to help us provide our programs and services. But in today’s economic and social climate it is increasingly difficult for the growing number of charities to compete successfully for the vital $$ we all need. So for the MDA, the importance of the efforts put in by those in the wider community to help us cannot be overlooked.

Bringing MD to the forefront in terms of public awareness and understanding has been a major goal of the MDA in its recent activities. Through event like Melbourne’s Delights, we have sown the seeds for solid and fruitful relationships with a range of community leaders, and their involvement with us can only be a positive for the MD community in the long term.

High school student Isaac Norman spent a week in a wheelchair recently to raise awareness and funds for the MDA, in memory of his best friend Zach Bartlett who lived with Duchenne Muscular Dystrophy. Musician Steve Richards put his talents to good use at The Planet Café for an “MD Benefit Concert” and members of the Victoria Police Cycle Club found a novel way to raise money for MDA by challenging one of their fellow cyclists to shave his head of 20 year old flowing locks! Perhaps the biggest fundraising challenge of all of these was taken on by Simon Costa of the Costa Group of Companies. Simon recently chose to tackle 1000km of the arduous Pyrenees mountain ranges through France and Spain on a bicycle and raised over $40,000 for MD Research.

You can read more on the achievements of all of these people on the following pages, but I will leave you with a message of thanks to these special individuals, and the many others who have lent of their time, energy and commitment to help us, the MD community to realise our Hopes, Dreams and Aspirations.

Until next time!

Boris M Struk