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).

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Through Sickness and Health: A Couple’s Love Perseveres in the Face of ALS

At home with Jeff and Darlene Sutherland

This article was originally published on the blog of the ALS Society of Canada on November 15, 2019, with kind thanks for their permission to reuse it.

The first thing one notices upon walking into Jeff and Darlene’s airy bungalow is the feeling of warmth and love that reaches into every corner: it’s present in the family photos that adorn the walls and the tasteful trinkets carrying messages of friendship and hope. And it’s a stark contrast to the second thing that’s evident: the soft, motorized whir of the breathing machine that keeps Jeff alive. It’s a constant reminder of the thin line between life and death – a line with which Jeff and Darlene are all too familiar.

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The ALS Association and coalition partners call for quick review of ACA by SCOTUS

The ALS Association and 23 partners that represent millions of patients across the country released a statement strongly supporting the petitions filed today by state attorneys general and by the U.S. House of Representatives that seek expedited U.S. Supreme Court review of last month’s Texas v. United States ruling. The ruling endangers patient access to adequate, accessible and affordable health care.

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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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