The Accelerating Access to Critical Therapies for ALS Act will make $100,000,000 available each fiscal year from 2022-2026 to build new pathways to fund early access to ALS investigational therapies, accelerate ALS and neurodegenerative disease therapy development through a public-private partnership, and increase research on and development of interventions for rare neurodegenerative diseases through a new Food and Drug Administration (FDA) research grants program.
What do the bills do?
Empowers the existing FDA Expanded Access program for drugs developed by Small Pharma
Supports FDA research goals as data from the EAP will be collected by same researchers conducting the Phase 3 trial so it supports larger sample size & drug approval
Increases access to Health Care as Expanded Access are only disease modifying drug options for people with ALS· Veterans with ALS need to be taken care of. 1 in 6 people w ALS is a veteran. They got ALS from their service to our country. Our Veterans deserve every chance to get access to drugs to help them fight for their lives
Expanded Access works. Look up Naval Pilot Matt Bellina. Matt got up out of a wheelchair after getting a drug that was in Phase 3 trials.
Makes Right to Try a reality by providing funding for Small Pharma developing drugs for ALS
The Bill supports LIFE, by allowing moms, dads, kids, grandparents, etc. a chance to live the lives they deserve.
If you want to help people with ALS gain access to life saving therapies: Click here and take action!
You will be guided through a fast & simple process that will help give American with ALS the fighting chance to live the lives they were meant to live.
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· ALS is always fatal
· Patients typically live for 2 to 5 years after their first symptom
· People with ALS eventually lose their strength
· People with ALS eventually lose their ability to speak clearly
· People with ALS eventually lose their ability to move their arms & legs
· People with ALS eventually lose their ability to move their body, neck or head
· People with ALS eventually lose their ability to walk, talk, chew food & swallow
· People with ALS eventually lose their ability to breathe, ultimately leading to
· People with ALS do not lose their ability to feel every single part of their body,
despite the fact they cannot move.
· People with ALS do not lose their ability to see, hear & think.
· ALS leaves its victims trapped inside the glass coffin; a lifeless body with a fully
alert, functioning mind.
Pretty horrifying, right? Actually, we left out one very important detail:
There are ALS drugs/therapies available today, that in clinical trial, proved to extend life, improve the quality of life, slow or stop ALS progression, and ALS progression, in many of the trial participants. These therapies passed all safety standards. ALS is 100% fatal. True, they worked for some patients and not for others. However, when faced with 0% chance for survival, why not grant access to HOPE? Sadly, these promising therapies are wrapped up in FDA red-tape.
These treatments are made by small pharmaceutical companies (one has six employees). The Act for ALS Bills will fund expanded access to make therapies like these available to people with ALS.
Post this link on your social media, Facebook, Twitter, LinkedIn, email and text every contact in your phone and ask them to take 5-10 minutes to help change the history of ALS. ALS can become a treatable chronic disease and no longer a death sentence.