A recent publication from Charcot-Marie-Tooth News announced that this year, for the first time ever, the Muscular Dystrophy Association will be hosting its annual clinical conferences at the same event – one week under one roof in Orlando, Florida.
Old Nonprofit, New Tricks
Jerry Lewis was “the King of Comedy” – but he did a lot more than just tell jokes. Those who grew up watching Lewis may remember him equally well for his Labor Day Telethon to raise funds for the Muscular Dystrophy Association (MDA). For over 40 years Lewis hosted the event, which helped to make the MDA the country’s largest non-governmental provider of neuromuscular disease research funding.
Now, just two years after Lewis’ death, the MDA is discussing how to make best use of his legacy.
“Jerry put us on the map,” said MDA President Lynn O’Connor Vos of the late comedian in a phone interview with BioNews Services. But that was years ago – does Lewis’ legacy still bring people into the fold of muscular dystrophy research like it once had? “A lot of people over 60 recognize the organization,” O’Connor Vos noted. However, difficulties remain engaging young people.
It’s with this concern in mind that the MDA is shifting its operating procedure. Rather than organize a diffuse array of conferences over a given year, instead, the organization will host a single, massive, 4-day gathering in Florida.
Researchers, students, and patient advocates alike are invited to attend and participate at the conference. O’Connor Vos and others hope that restructuring the organization’s conference strategy will solidify interest in young people, and inspire continued support of the group that has enjoyed such astounding success in earlier decades.
Getting in Touch with the Kids
The groundbreaking conference will feature presentations from Dr. Janet Woodcock (the director of the Center for Drug Evaluation and Research at the FDA) and Dr. Peter Marks (director of the MDA’s Center for Biologics Evaluation and Research). Dozens of clinical and scientific sessions will be hosted over the days of the conference, including the presentation of neuromuscular disease research conducted by some 60 young researchers who have previously received grants from the MDA.
This emphasis on engagement with student communities, as well as the research being conducted by young scientists, is the essence of the MDA’s bid to attract fresh blood.
The organization has dispensed some $1.4 billion in research grants in its nearly 7 decades of operation. Although last year the group committed another $23 million in grants on top of the $58 million it was still funding, members of the organization always hope to give more.
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