ALS Ice Bucket Challenge Progress

 

Your Voice Matters

You can lead us closer to a world without ALS by joining our dedicated network of advocates throughout Pennsylvania, New Jersey, and Delaware. As an ALS advocate, you can help change the laws and policies that affect thousands of people living with ALS and their families.

The last decade has been a decade of progress for ALS advocacy, ensuring passage of legislation to improve access to research and securing millions of dollars in funding for ALS care from state governments in Pennsylvania, New Jersey, and Delaware. These outcomes were achieved because of the compelling stories our advocates continue to share through letters and visits with lawmakers.

UPDATE! The FDA has approved AMX0035 (Relyvrio), a new treatment that has been shown to slow progression of ALS and extend life. This is an amazing development in the fight against ALS, and a meaningful win for the entire ALS community who worked tirelessly to make this happen. We still have a lot of work to do to cure ALS, but this new treatment is a significant step in that fight.

"Thank you to all of the ALS advocates for sharing your personal stories and for fighting for more research funding," said Chapter Executive Director Jeff Cline. "This is a major achievement for the ALS community, and it is due to the collective efforts of researchers, care professionals, families living with ALS, and everyone who has donated or added their voice to the ALS cause."

 

To participate in ALS advocacy, please contact Tony@alsphiladelphia.org.

Advocacy Goals for 2022

•    Fully Fund the ACT for ALS Act, which was signed into law in 2021
•    Increase Federal Funding for ALS Research
•    Permanently Extend Access to Telehealth for People Living with ALS
•    Fund ALS care services in Pennsylvania, New Jersey, and Delaware
•    Make ALS a reportable disease on a state level

 ALS Advocacy        ALS Advocacy One
         
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Lura and Peter Sawyer were presented with The ALS Association's 2022 Hero Award for their amazing efforts in ALS advocacy, awareness, and organizing for the Walk to Defeat ALS.

 

Congratulations to 2020 ALS Association Hero Award winner John Russo.
Thank you for your contributions to ALS Advocacy.