Download The Honorable [Name] [Address] [City, State, ZIP] [Date] Dear

The Honorable [Name]
[Address]
[City, State, ZIP]
[Date]
Dear [Representative/Senator Last Name],
My name is [your name], and on behalf of the myotonic dystrophy community, I want to thank you
for passing the Paul D. Wellstone Muscular Dystrophy Community Assistance Research and Education
(MD-CARE) Amendments (H.R.594). I also urge you to support the 21st Century Cures initiative and
the continuation of the Orphan Drug Tax Credit.
Myotonic dystrophy (DM) is the most common form of adult-onset muscular dystrophy, and is the
only form that has impacts on cognition and brain function, in addition to impacts on the heart,
lungs, muscles, gastrointestinal system, and many other body systems. Because DM is multi-systemic
and variable, symptoms can vary widely and it is significantly under-diagnosed. The congenital and
juvenile-onset forms of this disease are particularly devastating. As a genetic disease, it impacts entire
families and becomes more severe with each successive generation.
I understand firsthand the need to invest in DM research. [Insert personal connection to DM, 1-2
sentences.]
Since its initial passage in 2001, the MD-CARE Act has transformed life for Americans impacted by
many different forms of muscular dystrophy. The recent proposed amendments, introduced in 2013,
build on the successes of the original bill by amending and updating its language to reflect changing
research and clinical landscapes for muscular dystrophy. The bill means so much to the DM
community, and we are so grateful for your support of this crucial legislation!
Because there are currently no treatments or a cure for DM, there is a real need to continue
investment in this disease arena, especially in regards to the drug development pipeline. The 21st
Century Cures Initiative is a bipartisan effort within the Energy & Commerce Committee aimed at
improving the treatment research, development and delivery process within the US. As a member of
the 21st Century Cures Coalition, the Myotonic Dystrophy Foundation has submitted comments to the
Energy & Commerce Committee detailing how the new initiative can benefit the myotonic dystrophy
community. Additionally, the Orphan Drug Tax Credit, first introduced as part of the Internal Revenue
Code of 1986, allows drug manufacturers to claim a tax credit of 50% of certain research costs for
P.O. Box 29543, San Francisco, CA 94129
www.myotonic.org
|
86-myotonic or 415.800.7777
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email: [email protected]
orphan drugs. Because of this tax credit, more research is taking place for orphan diseases than ever
before, and one-third of new drugs being approved by the FDA each year are for orphan drugs that
benefit from this tax credit.
Despite advances that have been made, total funding for DM research – both academic- and
industry-based – still lags behind. Few people ever have the opportunity in their lifetime to help cure
or reverse a form of muscular dystrophy, but you are in a unique position to help advance DM
research and influence the development of treatments for this disease. Thank you for passing the
MD-CARE Act! We hope you will help us continue to drive rare disease drug development through
supporting the 21st Century Cures Initiative and the Orphan Drug Tax Credit.
Sincerely,
[Your name]
[Address]
P.O. Box 29543, San Francisco, CA 94129
www.myotonic.org
|
86-myotonic or 415.800.7777
|
email: [email protected]