For the first few years after I was diagnosed with ALS, I followed a daily routine of walking laps in the shallow end of our neighborhood outdoor pool. I soon became friends with a group of women who used the pool at the same time as me. I’ll always…
My summer as the ALS bag lady taught me how to ask for help
Treatment with the experimental therapy jacifusen was generally well tolerated and appeared to slow or even reverse disease progression in some people with amyotrophic lateral sclerosis (ALS) caused by mutations in the FUS gene. That’s according to data from 12 people who received the therapy as part of an…
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Embracing the Present During My Journey With ALS
His ALS diagnosis made Air Force Veteran Michael focus on what matters most to him—strengthening his relationships with his children. Hear more about how he generates hope for others with ALS so they can stay in the fight. This content is sponsored by Tanabe Pharma America, Inc. (TPA) and is…
One of the interesting mental challenges I continue to experience as I live with ALS is its effect on my perception of time. The predicted prognosis of living only two to five years after symptom onset is a shadow that hangs over every ALS patient. Even though I’ve broken that…
Oral small molecule TPN-101 has been selected for testing in amyotrophic lateral sclerosis (ALS) as part of the HEALEY ALS platform trial. The decision to include TPN-101 in the platform trial (NCT04297683) was based on the treatment’s unique mechanism of action and final data from a Phase 2 clinical…
My late husband, Jeff, and I shared a love of the outdoors, even though our preferred activities were often different. I loved to hike and kayak, while Jeff, who’d been injured when a car hit his bicycle in 2010 and still suffered from orthopedic pain, preferred to relax. Whether at…
Antidepressants that suppress the rapid eye movement (REM) stage of sleep are associated with prolonged survival in people with amyotrophic lateral sclerosis (ALS), according to recent research. Because most muscles are paralyzed during REM, this could increase the risk of breathing issues, including possible respiratory failure, in people with…
We had a whirlwind of activity this past Memorial Day weekend, with friends visiting from out of town. We had blue skies, sunshine, and warmer temperatures than usual. After a long winter and the slow unfolding of spring here in Michigan’s Keweenaw Peninsula, it felt like a gift.
Supporters will celebrate the 5th annual Lou Gehrig Day on June 2. The yearly event honors the legacy of the Major League Baseball (MLB) Hall of Famer whose high-profile struggle with amyotrophic lateral sclerosis (ALS) brought widespread attention to the rare neurodegenerative disease. Through awareness and fundraising initiatives,…
A study found that genetic mutations associated with amyotrophic lateral sclerosis (ALS) lead to problems with the function and transport of mitochondria, cellular structures needed for energy production, early in the disease course, before abnormal protein clumps are formed. “We show that the nerve cells, termed motor neurons, that…
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