While designating one month as an “awareness” month is surely not an instantaneous fix, the increased visibility of the clinical statistics and shared personal stories just may be the missing pieces of the ALS puzzle.
Awareness can also be a tool for advocacy, an opportunity to connect with policy makers and share the urgency of action; backed up by our entire ALS Texas community! Every clinical trial, every milestone in advocacy leads us one step closer to creating a world without ALS.
Did you know that:
- There are currently 58 active clinical research trials in Texas?
- On December 23, 2021 we reached a groundbreaking milestone for the ALS community. President Joe Biden signed the Access to Critical Therapies (ACT) for ALS Act into law? ACT for ALS brings hope to the fight against ALS.
- See more of our community’s impact in 2021:
There area number of ways to raise awareness, to help ensure that your voice is heard-and there is no age limit. Coming together as a community gives everyone an opportunity to become involved.
In Texas, we know that there are more than 3,000 young caregivers ages 5-30 years of age, and during the month of May, even youth and children can take action. We’ll tell you exactly how to do this and more in this newsletter!
How can you continue to raise awareness in the fight against ALS this month?
- Urge your representatives to support ALS research funding by signing the Dear Colleague letter.
- Tell Insurers and Policy Makers to Ban Discrimination Against People Living With ALS
The Institute for Clinical and Economic Review (ICER) is reviewing Amylyx Pharmaceutical’s AMX0035 and Mitsubishi Tanabe Pharma America’s (MTPA) oral edaravone. Their review will make a “value assessment” on these new therapies which will impact decisions on cost and access made by private and public insurance such as Medicaid at the state level and Veteran’s Affairs at the federal level. ICER’s value assessment uses methodology which has been called discriminatory by the National Council on Disability, a trusted advisor of the President and Congress. Sign the petition linked below to tell insurers and policy makers to ensure people living with ALS have immediate, full coverage and affordable access to new therapies. Sign our petition here. - Get an early start, and form your Walk to Defeat ALS team with family and friends.
- Celebrate with us in October! We will be walking in-person in cities across Texas –
Dallas, San Antonio, and The Woodlands on October 1.
Austin, Fort Worth, and Houston on October 15.
El Paso and Rio Grande Valley on October 29.
- Celebrate with us in October! We will be walking in-person in cities across Texas –
Awareness creates a foundation for change.
Together, as an ALS Texas community, in May and every month, let’s lock arms and be the catalyst for change!
-Tonya Hitschmann, Director of Community Programs
