March 13, 2001

ON MDA's HISTORIC TRIP TO CONGRESS

As many of you know by now, on Feb. 27, a delegation of MDA leaders, headed by National Chairman Jerry Lewis, made history. For the first time in our 50 years of existence, MDA directly advocated government support for the fight against neuromuscular diseases.

Jerry and other MDA spokespersons persuasively explained in a hearing convened by the health subcommittee of the Senate Appropriations Committee that a huge increase is needed in federal funding for muscular dystrophy research through the National Institutes of Health. You can read more about the visit, including the testimonies of Jerry Lewis, MDA Medical Advisory Committee Chairman and Board member Dr. Leon Charash and MDA Board member Chris Rosa, on this site.

Since the Washington trip, many of you have responded to my March 2 letter asking for your assistance in encouraging Congress to boost NIH funding for muscular dystrophy research. You've written beautiful and convincing letters, which bolster the case that it's time for the government to step in.

"Without government support, many trials will never happen and those that do will take much longer," Jerry Lewis said.

These letters of support are vital. They can underscore MDA's message to the Senate subcommittee: That for 50 years MDA has been laying the groundwork that's brought science to the brink of testing several promising, high-tech, high-cost treatments. But in the next few years, it will take more funds than MDA can allocate to refine these potential treatments (gene therapies, cell therapies, new drugs) and test them in humans.

We've done the hard part -- beginning with virtually no understanding of the causes of muscular dystrophy, our scientists have taken apart the muscle cell and its genes to uncover just what goes wrong to cause each form of the disease. And they've found that new genes, cells or compounds can correct those gene flaws, at least in the laboratory.

Your messages to your senators and representatives are having a major impact as we continue to work with Congress to develop specific legislation to help increase the momentum of this progress. We're in close communication with Senator Arlen Specter, who chaired the hearing, as he follows up on the need to secure more funding and to change the NIH's grants review and allocation process to make it more efficient. Specter and some of his colleagues have shown strong support for MDA's request.

MDA has always been blessed by the generosity of the American people in advancing our mission, and we're endlessly grateful for that essential support. Now, our mission includes seeing that more federal money is invested in speeding the search for cures and treatments. We need your help again, this time your voice.

I hope all of you will send letters, e-mails or other messages to your members of Congress. (You can find their names and addresses at www.congress.org.) Tell them your own story and why muscular dystrophy research is so important to you. Tell them they have the opportunity to save lives, to stop the heartache that muscular dystrophy wreaks, to do what's right.

As always, the support of our friends, including families who know neuromuscular disease firsthand, will make all the difference.

With every best wish . . .

The Ross Report Archive