Dear Representative (Last Name) 

 

I am your constituent and live in [city]. My family is sadly impacted by the specter of inherited ALS / FTD. Multiple family members of mine have died of this terrible disease, and it is coming in the future for more, [possibly including me]. 

 

The treatment options for people suffering from these linked neurodegenerative diseases are limited and most people do not live for more than 2 or 3 years after an ALS diagnosis. We need research to develop new therapies to prolong lives and to better predict the onset of symptoms in those at risk and intervening earlier. 

 

I ask that you include the following funding requests for ALS research.  These requests were developed with a range of stakeholders across the ALS advocacy community, including Genetic ALS & FTD: End the Legacy: 

 

1. Invest in clinical research by increasing funding to $80 million for the ALS CDMRP

program at the Department of Defense (ALSRP) in FY2026. In the United States,

Veterans are twice as likely to develop ALS. In FY2024, it was reported that ALSRP

received $80 million+ in research proposals that were scored at the fund level; double the Congressionally allocated amount. This meant numerous high-quality research projects for novel ALS therapies were unfunded. If we are to end ALS, a currently terminal, underfunded disease, we cannot let high-quality research go unfunded. We must fund research to understand and find treatments for a disease that is service-connected, has a higher incidence among Veterans, and has direct relevance to the health of our military.

 

2 .   Fully fund the ACT for ALS at $100 million for FY2026, specifically allocating $75

million for the National Institute of Health (NIH) expanded access program under section

2 and $25 million for the HHS Public-Private Partnership for Rare Neurodegenerative

Diseases and FDA Rare Neurodegenerative Disease Grant Program. Any funds that NIH cannot use for expanded access should go towards therapeutic research development to advance new ALS therapies. We also request the FDA continue to exercise its 2019 guidance on regulatory flexibility and to consider patient tolerance for risk in ALS drug Approvals.

 

3.    Support NIH funding for ALS research. A reduction in research funding for ALS poses a

significant risk to the progress of developing new therapies, identifying biomarkers, and

ultimately finding a cure for ALS. Therefore, we request an increase in funding to

provide $180 million in 2026 for pre-clinical and clinical ALS research.

 

4.    Address underfunded research at the Centers for Disease Control and Prevention (CDC). CDC currently receives $10 million in funds for the National ALS Registry and Biorepository. We request an increase to $15 million to maintain this program and  support research into causes and prevention strategies for sporadic and familial (genetic) ALS that can lower the incidence of ALS, including environmental impact.

 

We must continue to see progress and lead the world in helping end these diseases for this generation and those to come. 

 

With appreciation