The Everylife Foundation for Rare Diseases is offering a new scholarship for students from the amyotrophic lateral sclerosis (ALS) community in the U.S. who are planning to enroll full time in an undergraduate program for the upcoming academic year. The Paula Kovarick Segalman Family Scholarship for ALS…
A few weeks ago, I visited the Paavola Wetlands Nature Area a few minutes from my home. A local group that meets monthly for prayer and reflection was at the preserve, and since they were in the neighborhood, I decided to stop by. I’d be able to get back quickly…
Nancy Muirhead is a clinical psychologist. Born and raised in Los Angeles, she and her husband moved to Washington state to be closer to her adult children and grandchildren while continuing to work remotely. In August 2024, she was diagnosed with nonfamilial bulbar-onset ALS. She is now focused on…
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…
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…
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 Mitsubishi Tanabe Pharma America, Inc. (MTPA) and…
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…
