2019 Highlights in the Fight Against ALS

As 2019 winds down, we look back on some of the important progress made this year in the fight to change the future of ALS. With the hard work and help from so many across the ALS community, the ALS Association was able to make great strides in our key mission areas, bringing us one step closer to our vision of a world without ALS.

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"We Won't Let ALS Steal Our Joy"

By Erika Gram,
ALS caregiver & daughter

Our home has always been filled with family, friends, and joyful celebration during the holiday season. It’s a time to connect with loved ones and create lasting memories.

After my dad was diagnosed with ALS in March of 2017, creating holiday memories became especially important for our family. The average life expectancy for someone with this disease is 2 to 5 years, so we understand that every moment we spend together is precious.

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Future of Affordable Care Act Uncertain After Court Ruling

Court Ruling leaves Affordable Care Act’s (ACA) provisions in place, including protections for pre-existing conditions for people with ALS and other Americans. But court keeps long-term future of ACA in limbo.

The ALS Association joins with other leading patient advocacy organization in a joint statement expressing disappointment on a ruling in the Texas v. United States court case which challenges the legality of the Affordable Care Act (ACA). The statement was signed by 27 other groups including American Heart, American Lung, American Diabetes, MDA. See the full statement here.  

What is most important for people living with ALS and their families to know is that the decision left the Affordable Care Act in place for the moment. This means that protections for pre-existing conditions stay in place. Coverage purchased from healthcare.gov remains valid and coverage provided by states under Medicaid expansion continues.  

However, the ruling left the ACA in limbo by affirming the unconstitutionality of the individual mandate and by sending the case back to a lower court to decide if key patient protections will remain in the future.

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Lawmakers Agree on Spending Bill that Fully Funds ALS Association Priorities

A 2020 federal spending agreement reached Monday between House and Senate negotiators would fully fund key spending priorities of The ALS Association and its advocates. ALS advocates have sent 13,800 letters and 3,600 tweets, and held more than 700 meetings in the past year to secure full federal funding of ALS research. 

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NurOwn and the Therapy Development Process

The ALS Association, our partner ALS organizations, and the wider ALS community are all hopeful that several therapies currently in Phase 3 clinical trials will prove to be successful in slowing, halting, or reversing ALS. 

One of the therapies now in Phase 3 trials, NurOwn, has been the subject of considerable discussion on social media. Some of what is being stated on social media is unfortunately not accurate, and risks misleading people with ALS and their caregivers.

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ALS Roundtable on Ensuring Access to New Therapies for People With ALS

With many ALS drugs now in phase II and III clinical trials, The ALS Association is considering strategies that will ensure any new treatments are accessible and affordable. We used our second ALS Roundtable to explore several important questions for our community including: How will these new therapies get paid for? How can people access to them? How long will it take to get access? 

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Remembering Pete Frates, Co-Founder of the ALS Ice Bucket Challenge

With heavy hearts, The ALS Association joins the ALS community in celebrating the legacy and mourning the loss of Pete Frates, who died Monday at age 34 after a seven-year battle with ALS.  

Pete lived a Hall of Fame life. 

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