ALS Ice Bucket Challenge Progress
Dear Colleague:
Please join us in the fight against Amyotrophic Lateral Sclerosis (ALS) by supporting funding in the Fiscal Year (FY) 2018 Labor, HHS and Education Appropriations bill (LHHS) for the National ALS Registry at the Centers for Disease Control and Prevention (CDC). This programmatic request will support the collection of critical data that can help scientists learn what causes ALS and how it can be treated or even prevented.
In 2008, Congress passed and President Bush signed into law the ALS Registry Act (P.L. 110-373), which authorized the CDC to establish the National ALS Registry. Congress has maintained funding for the Registry, and we hope you will join us in supporting a $10 million appropriation in FY 2018 for the CDC to continue this vital research project.
On June 2, 1941, baseball legend Lou Gehrig lost his fight against ALS, a fatal neurodegenerative disease that now bears his name. Unfortunately, more than 70 years after Gehrig’s death, we still do not know what causes ALS or how to slow the progression of the disease. Sadly, the prognosis for our constituents diagnosed with this disease is death in an average of two to five years. However, with your support, we can provide hope that a cause and treatment will be found as a result of the data collected by the National ALS Registry.
Thanks to previous Congressional support, the Registry is fully operational, collecting critical information about potential causes of ALS, connecting patients to clinical trials, and funding ALS research. FY 2018 funding is needed to continue the Registry, coordinate federal efforts and conduct outreach activities to identify cases across the country. Funding is also needed to strengthen the Registry’s biorepository, which collects blood and tissue samples that will significantly advance epidemiologic studies and research into biomarkers, risk factors, and clinical studies necessary to identify new treatments.
Together, we can continue working towards finding a treatment and cure for ALS. Please join us in signing the following letter to the LHHS Subcommittee. If you would like to sign the letter or have further questions, please contact Catherine Rowland with Rep. Engel at or Jamie Matese with Rep. King.
Sincerely,
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Eliot L. Engel Member of Congress
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Peter T. King Member of Congress
March XX, 2017
Dear Chairman Cole and Ranking Member DeLauro:
We are writing to thank you for your previous support of the National Amyotrophic Lateral Sclerosis (ALS) Registry and respectfully request $10 million to continue the Registry at the Centers for Disease Control and Prevention (CDC). This programmatic request will build upon prior appropriations and enable the CDC to continue vital work to prevent and find a treatment for ALS.
ALS is a particularly cruel disease that destroys a person's ability to control muscle movement. As the disease progresses, its victims become trapped inside a body they can no longer control, unable to walk, talk, breathe or even blink an eye. There is no effective treatment for ALS, no known cause, and no cure. The disease can strike anyone, regardless of their age, gender, race or nationality, and it is always fatal.
In 2008, the House passed the ALS Registry Act by an overwhelming 415-2 vote, and President Bush signed the bill into law (P.L. 110-373) on October 8, 2008. With Congress’ previous support, the CDC and Agency for Toxic Substances and Disease Registry (ATSDR) have implemented the Registry, and are collecting unprecedented data about the disease from across the country. It is our hope this data may help identify what causes ALS and how it can be properly treated.
Fiscal Year (FY) 2018 funding is needed to continue the Registry, coordinate federal efforts and conduct outreach activities to identify cases across the country. Funding is also needed to strengthen the Registry’s biorepository, which collects blood and tissue samples that will significantly advance epidemiologic studies and research into biomarkers, risk factors, and clinical studies necessary to identify new treatments.
We urge you to support this programmatic request and include $10 million in the FY 2018 Labor, HHS and Education Appropriations bill. We look forward to working with you and the Subcommittee on this important issue. Thank you for your consideration.
Sincerely,
