Keeping In Touch Spring 2010

by Gerald C. Weinberg on March 31, 2010 - 2:33pm

QUEST Vol. 17, No. 2

The renewal of hope that comes with spring will be reflected in the gathering of several important committees of experts who advise the Association on advancement of its top-notch research and services programs.

In April and May, our two research advisory committees — the Scientific Advisory Committee (SAC) and Medical Advisory Committee (MAC) — hold the first of their two yearly meetings. MDA is grateful to have the world’s foremost neuromuscular research experts volunteering their services on these committees, carefully reviewing each research grant application and recommending the best for funding. The MAC is headed by noted researcher and physician Stanley Appel of Methodist Hospital in Houston. The SAC is chaired by Louis Kunkel of Children’s Hospital in Boston, the celebrated researcher whose team discovered the gene that underlies Duchenne and Becker muscular dystrophies.

It should be noted that MDA is unique in its ability to act quickly on exciting grant requests that come up outside of this six-month review process.

MDA also is buzzing with plans for two new volunteer advisory committees, the CAC and RAC. The CAC  — Clinic Advisory Committee  — has been charged with helping review our nationwide program of more than 200 MDA clinics. The RAC — Registry Advisory Committee  — will help guide MDA’s new nationwide disease registry, which is being piloted in several clinics this year and which will collect valuable data for ongoing research.

Research costs money, plain and simple. And so, as the various advisory committees gather to do their important work, MDA staff is rolling up its collective sleeves and recruiting volunteers to help raise the required funds. As we head into summer, we’re working on Lock-Ups, Fill-the-Boot drives, Stride & Rides, our Telethon Online Auction and of course, the “big show” itself  — the Jerry Lewis MDA Telethon. Your support of any or all of these efforts can make an important difference.

R. Rodney Howell, the physician and medical geneticist who heads MDA’s Board of Directors, had an opinion piece published this January in the Miami Herald, in which he spoke about the recent motion picture “Extraordinary Measures,” which tells the story of a father’s search for a treatment for Pompe disease, a quest in which MDA played a key role. Howell wrote, “… in the quest for new drugs for genetic diseases, it’s rarely a single hero who saves the day, but a worldwide village of researchers and funding organizations like MDA patiently working together for the common good.”

The MDA family is proud to be part of that “village,” whether by gathering the best minds in science or gathering a group to walk in a Stride & Ride. Working together, we’re making it happen.

Gerald C. Weinberg

Gerald C. Weinberg
President & CEO

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