President signs Act for ALS into law | Local News | benningtonbanner.com - Bennington Banner
BENNINGTON — Following lobbying by Bennington resident Rebecca Andrews and other advocates across the country, President Joe Biden on Thursday signed into law a bill making $100 million a year available through 2026 to fund early access to ALS (also known as Lou Gehrig’s disease) investigational therapies. The bill also increases research and development of interventions through a new Food and Drug Administration grants program.
ALS is a progressive neurological disorder that damages nerve cells and causes disability. It is thought to affect one in 300 individuals. There is no cure.
The bill aims to advance ALS research by creating a new grant program that supports the development of investigational treatments while making them available to patients who cannot participate in clinical trials. In addition, it establishes a public-private partnership for rare neurodegenerative diseases that fosters development and evaluation of treatments.
The Bennington Banner recently highlighted the plight of the Andrews family and their fight against ALS in a series of articles in early December. Ethan and John Andrews, brothers born one year apart, died of the disease one year apart — Ethan in the summer of 2020, and John in 2021 — after battling a rare form of genetic ALS.
Rebecca Andrews made a promise to her sons before they died that she would fight for a cure and for affordable therapies to treat the devastating effects of the disease. She joined with other mothers across the nation to educate lawmakers about the devastation of ALS and to push for the legislation. Now, her family and thousands of others will benefit from the legislation she helped move into law.
“How incredible, President Biden signed this bill into law a couple of days before Christmas,” Andrews said on Thursday. “It truly is a Christmas miracle for all the families that won’t have their loved ones seated at the table this weekend and for all those who have suffered and continue to suffer from ALS. Families from all over stepped up and put themselves out there for this. It’s made an impact. We made this happen in record time, and it came to life today.”
Before signing the Act for ALS bill, Biden addressed the families and victims of ALS.
“The bill I’m about to sign into law truly represents the spirit of the season of hope and light, goodness and grace. It’s the power of everyday Americans doing extraordinary things. I’m glad to sign this bill for the families and loved ones who suffer from this terrible disease.”
Biden signed the bill in front of a large screen filled with ALS patients, families and caregivers.
“God Bless you all,” he said after signing.
source: https://www.benningtonbanner.com/local-news/president-signs-act-for-als-into-law/article_2c17e9de-6433-11ec-9078-7b238e0d4518.html
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