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ALS Association
Q&A: How Amylyx NDA Announcement Moves the Fight for Access to AMX0035 Forward
After Amylyx’s announced that it intends to file a new drug application for AMX0035, The ALS Association immediately called on the U.S. Food and Drug Administration to approve the treatment for all people with ALS as soon as possible. Connecting ALS talked to the team at Amylyx to learn about the path ahead for access to AMX0035.
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ALS Association
Case of AMX0035 Proves Advocacy from ALS Community Can Impact Drug Development
There is a lot to do, and this grounded focus of making ALS livable helps us hold everyone—ourselves, the FDA, and the research community—accountable to real impacts on real people with ALS and the time it takes to deliver those impacts. This week has been a big step forward for the ALS community, and we will continue urgently working to keep the momentum going.
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ALS Association
Congress Approves Key Funding to Help Us Reach Our Goal to Make ALS Livable
Thanks to the tireless efforts of ALS advocates across the country, the House included many of our aggressive requests for new and increased investments in research to find treatments and a cure, slow symptom progression, reduce the number of new cases, and increase the length and quality of life for every American living with ALS.
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ALS Association
Our Response to the FDA’s Latest Letter and What We’re Doing to Keep Up the Pressure
Following our We Can’t Wait Action meeting with the FDA, we sent a letter to the agency asking it to reaffirm its commitment to the 2019 ALS Guidance and provide us with a detailed report showing how it has implemented the guidance. This week, the ALS Association received a response from Dr. Patrizia Cavazzoni, Director of the Center for Drug Evaluation and Research.
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ALS Association
ALS Association Wraps Up Virtual Advocacy Conference with Calls on Congress to Act
ALS advocates are pursuing an aggressive set of public policy priorities for people living with ALS and their families. These priorities include increased federal funding for ALS research, creating new pathways for expedited approval of promising treatments including the Promising Pathway Act and ACT for ALS, making permanent expanded access to telehealth, and increasing access to high-quality health care and veteran's benefits.
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ALS Association
ICYMI: We Can’t Wait Action Meeting Pushes FDA on Access
People with ALS on Tuesday called on the FDA to use its existing authority and the flexibility it promised the ALS community it would use to make experimental drugs that show incremental benefits available as quickly as possible. The comments came in a “We Can’t Wait” Action Meeting with FDA organized by The ALS Association.
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ALS Association
We Can't Wait Action Meeting with FDA: What We Heard and What's to Follow
We are  deeply grateful to the eight speakers who shared their wisdom and personal experience with the FDA,  as well as the  more than 150 others from the community  who have done so  online. We continue to hear that people with ALS want effective treatments now, even if they offer modest benefit, and are willing to face considerable uncertainty and risk to do so.
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ALS Association
ALS Association to Host FDA, Industry in “We Can’t Wait” Action Meeting
Later this month, the ALS Association will host a virtual session focused on the urgent need for timely access to new therapies. Leaders from the U.S. Food and Drug Administration (FDA) and industry companies will listen to people living with ALS speak directly about their expectations for their experiences with the disease and how important it is to have timely access to therapies that have the potential to provide incremental benefit in improving how people feel, function and live.
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ALS Association
Behind Recent Changes at CMS to Expand Telehealth
Recent changes to Medicare will enable people with ALS to receive services from speech language pathologists via telehealth through the end of the COVID-19 pandemic. These services include clinical care for swallowing and speech-generating devices - many challenges people living with ALS are faced with every day.
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ALS Association
CMS Expands Telehealth Coverage for Speech-Language Pathology Services: Another Win for the ALS Community
Recent changes at the Centers for Medicare & Medicaid Services (CMS) will enable people with ALS to receive critical services provided by speech therapists, normally provided at in-person visits, via telehealth during the pandemic. These services include clinical care for swallowing and speech-generating devices - many challenges people living with ALS are faced with every day.
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St. Louis Regional Chapter / ALS Association
Pattie Hamlin: A True ALS Hero
“Shortly after being diagnosed, I began researching and discovered how devastating this disease really is,” Pattie says. “In those early months I struggled emotionally with the outlook that was now my reality. Eventually, I chose to use my situation as motivation to try and make a difference for the future of ALS.”
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ALS Association
A Spotlight on ALS Advocacy for 2021
The ALS Association supports ACT for ALS and the Promising Pathway Act as they were originally introduced in the last Congress. Following the 2020 election, a new Congress was sworn-in in January of 2021. The legislative process requires that both bills be reintroduced to the newly elected Congress, and we are working with our congressional champions to reintroduce them as soon as possible. We believe both bills will make a positive impact on people living with ALS and look forward to working with the community and Congress to pass them.
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ALS Association
ALS Advocacy Pays Off With Enormous Win Ending SSDI Waiting Period
The ALS community earned a hard-fought victory this week with passage of the ALS Disability Insurance Access Act, ending the five-month waiting period for people with to start receiving their Social Security Disability Insurance (SSDI) benefits.
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ALS Association
Senate Vote Shifts Fight to End SSDI Waiting Period to House
The U.S. Senate on Wednesday passed the ALS Disability Insurance Access Act – a huge success that would not have been possible without the tireless advocacy of ALS advocates across the country. Thank you for every action you took to make this vote a reality!
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