The Honorable Members of the ALS Caucus
United States Congress
Washington, D.C. 20515
Subject: Urgent Action Needed to Preserve Funding for the National ALS Registry and Biorepository
Dear Members of the ALS Caucus,
We, the collective voice of the ALS community across the United States, write to express our profound concern and to urge immediate action in response to the recently leaked draft memo from the U.S. Department of Health and Human Services (HHS), which proposes the elimination of federal funding for the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention (CDC).
This alarming development represents a substantial and unacceptable threat to the progress we are making in understanding, treating, and ultimately preventing and curing amyotrophic lateral sclerosis (ALS), a disease that disproportionately impacts members of the military and veterans. Eliminating this funding would dismantle a crucial scientific and public health resource that thousands of Americans affected by this devastating disease have selflessly contributed to over the past 17 years.
The Congressionally mandated National ALS Registry and Biorepository is the only comprehensive, nationwide effort to collect and analyze data on ALS in the United States and the only government program focused on identifying risk factors that could be used to prevent ALS in the future. It has enabled researchers to identify possible environmental and genetic links, track disease trends, enhance patient recruitment for clinical trials, and inform national research priorities.
Losing this would erase the legacy of the more than 8,000 Americans who have shared their personal data and the 1,500+ who have donated bio samples before and after their deaths. It also would stall momentum and isolate people living with ALS at a time when advancements in ALS research are more promising than ever.
Specifically, the National ALS Registry:
- Has collected more than 110,000 risk factor surveys, representing the largest, most geographically diverse collection of ALS risk factor data available.
- The Biorepository contains over 70,000 samples, including DNA, urine, blood, and cells that can be used to create induced pluripotent stem cells (iPSCs), which are the most frequently reported biospecimen used in newly funded ALS-related grants.
- Data collected by the Registry has led to 120 published journal articles, including papers that have linked the development of ALS with persistent organic pollutants and other environmental factors.
- At least 10 other analyses of Registry data have described the public health burden of ALS in the United States, which are crucial in evaluating the resources needed to address the needs of people living with ALS at a national level.
- More than 50 U.S.-based and international institutions have used the Registry to recruit thousands of people living with ALS to participate in more than 65 clinical trials and epidemiological studies.
The nearly 30,000 Americans living with ALS deserve better. They deserve a government that honors the commitment it made in 2008 to preventing and curing ALS. Eliminating the Registry would not only undermine current research—it would endanger future breakthroughs and the hope of every family impacted by ALS.
We call on you, as members of the ALS Caucus, to take immediate and decisive action to restore and protect funding for the National ALS Registry and Biorepository. We also urge you to communicate directly with HHS to reject any plan that would abandon this vital program and any others that threaten to halt research for ALS.
Thank you for your continued leadership and dedication to the ALS community. With your support, we can continue moving forward—not backward—in the fight to end ALS.
Sincerely,
The ALS Association
Les Turner ALS Foundation
ALS United
End the Legacy
Everything ALS
Target ALS
Team Gleason
ALS One
Hop on a Cure
ALS Hope Foundation
Compassionate Care ALS
Her ALS Story
SunnyStrong
Answer ALS
