ALS Association Board Member Urges Congress to Protect the Right to Breathe

Tommy May, a member of The ALS Association National Board of Trustees, published a column in Morning Consult, a leading digital media platform among lawmakers, today urging Congress to protect access to noninvasive ventilators. May was diagnosed with ALS in 2005. He has used a ventilator since 2013 when his disease progression made it difficult for him to breathe on his own.

“Under a new rule created by the agency that runs Medicare, noninvasive ventilators will be included in the Competitive Bidding Program (CBP) for Durable Medical Equipment, Prosthetics, Orthotics, and Supplies (DMEPOS). Under this new system, the delivery of the respiratory care and services I, and many like me, rely on will be severely disrupted and lead to a potentially dangerous shortage of this equipment,” May wrote.

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In Case You Missed It: The ALS Association invests $3 million in first ever ALS platform trial to speed up clinical trial process

This week The ALS Association launched a major initiative, investing $3 million ($1 million per year over three years) in the first ever ALS Platform Trial. The trial will take place at the Sean M. Healey & AMG Center for ALS at Mass General in collaboration with the Barrow Neurological Institute and the Northeast ALS Consortium (NEALS).

Continue reading In Case You Missed It: The ALS Association invests $3 million in first ever ALS platform trial to speed up clinical trial process

Keep the Bus Moving: Kerry Goode’s Story

After a lifetime of participating in and leading two-a-day practice sessions, as a running back at the University of Alabama and the NFL, and later becoming a strength and conditioning coach in the NFL, Kerry Goode knew something was wrong when he couldn’t pick up a box.

“It only had a few things in it, so it really wasn’t that heavy, and I was struggling really hard to pick that box up. And so that made me get in the car and go to the doctor to see what’s going on,” Goode said.

Six months later, he was diagnosed with 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.

Continue reading Future of Affordable Care Act Uncertain After Court Ruling