If you want to help Jamie gain access to life saving therapies (such as NurOwn) click on the above link and you will be guided through a simple process that will help save Jamie's life and the lives of 20,000+ other Americans.
Please share this page on your social media, amongst your colleagues, with your family...every single action counts!
YOUR VOICE MATTERS. THANK YOU FOR CARING.
The above link allows you to e-mail as many Reps and Senators as you wish. Whether it be just one or all...you basically just need to input your name and the rest is done for you. If you have time and want to contact ALL that you possibly can, we say GO FOR IT!!
The Act for ALS Bills:
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.
-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.
Basically, it means that people dying from ALS might have a fighting chance to survive ALS. Please take action now.
Time is not on Jamie’s side: Act for ALS Bill
The ALS Community asked for a congressional hearing with FDA to discuss ALS drugs/treatments
(and how on EARTH they can withhold them from us!!)
Representative Frank Pallone confirmed with IAmALS that he heard us! The meeting that we all fought so hard for is to take place in late July.
What is the meeting agenda?
We deserve transparency on FDA decisions that impact the opportunity for us to access promising therapies and drugs.
Click on the link below to contact your Representative and Senators to request a congressional hearing be held with the FDA to discuss ALS and ALS therapy development.