December 2, 2002

On MDA’s Status as a Recognized Leader in Health Care

Every day the evening news reports that a new study has shown that eating more/less/some fiber is now recommended, or that yoga is out and tai chi is in, or that flossing your teeth twice a day is better than brushing three times….

You don’t always hear about progress in the things that are really important to those served by MDA, like prednisone dosing schedules, feeding tube management or respiratory care. While the mainstream media may not pick up on such developments, I assure you that MDA is making big news in areas like these which so much affect the daily lives of those living with neuromuscular diseases.

Conference Co-Chairman Hiroshi Mitsumoto

Recently, some 180 MDA clinic directors, respiratory therapists, physical therapists and other medical professionals came together to share their knowledge about medical management of neuromuscular diseases in Tucson, Ariz., where MDA’s National Headquarters resides.

The meeting, which lasted three days, covered many issues related to amyotrophic lateral sclerosis, spinal muscular atrophy, Duchenne muscular dystrophy (DMD) and limb-girdle muscular dystrophy. It also provided a forum for clinic directors with expertise in particular topics to share their knowledge with other MDA doctors from across the country. Ideas were exchanged and many subjects were the topic of lively debate.

Conference Co-Chairman Stanley Appel

In particular, thanks to better medical management pioneered by MDA over the last 20 years, there was a general consensus that boys with DMD are growing up to be men with DMD who have different needs and issues. Clinic directors described a group of young men with DMD who took prednisone for many years, pointing out that many have completed college and some have even obtained graduate degrees. It’s very gratifying to hear that good clinical care is making such a difference in the lives of those served by MDA.

The physicians were also able to hear from and meet leading scientists working toward therapies in neuromuscular diseases, allowing them to bring the latest information on research back to their patients.

The enthusiasm of the participants and the numerous heartfelt thanks we received for sponsoring the event truly bring home the dedication of the doctors who staff our clinics.

One clinic director wrote to us:

Thank you for inviting me to participate in the National MDA Clinic Directors Conference. The meeting was a great success, with just the right combination of research and clinical focus.

The presentations were outstanding with regard to both cutting-edge science and evolving standards of practice. I also had an opportunity to meet clinicians and support staff that I might not see at the usual scientific meetings.

As research breakthroughs bring us ever closer to developing effective therapies and cures for many of the diseases in MDA’s program, our network of clinics and neuromuscular disease specialists stands ready to speed these developments to those who need them.

MDA is making the news that’s important to you. To learn more about the presentations at the conference, please see this special Web report.

With every best wish...

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