The Motor Neurone Disease (MND) Association and Toyota (GB), the U.K. division of Toyota, have established a partnership to raise funds and improve awareness for the needs of people with disorders that include amyotrophic lateral sclerosis (ALS). The staff at Toyota (GB) selected MND Association as the company’s…

The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to help adults with a rare disease pursue personal goals through training and education. For a second year, the #RAREis Scholarship Fund — supported by Horizon Therapeutics – will award 35 one-time scholarships, each…

Family movie nights are great, but it’s a challenge to think of other things we can do together now that my husband, Todd, is paralyzed from ALS. I’ve long had a love-hate relationship with screens. I once envisioned myself as a mother who would encourage creative, independent play. My…

“One hundred bottles of beer on the wall, One hundred bottles of beer! Take one down, Pass it around, Ninety-nine bottles of beer on the wall!” That ditty was invariably sung, in unison, on all bus rides associated…

Amylyx Pharmaceuticals is planning to file an application by the end of this year requesting that the European Medicines Agency (EMA) approve AMX0035 as an oral treatment for amyotrophic lateral sclerosis (ALS). This follows a recent announcement that a similar application will be submitted to Health…

It all began as one of those typical online interactions when someone reaches out and asks for help. A gentleman contacted me via Facebook, explaining that his friend was recently diagnosed with ALS. He wanted to ask me a few questions. I noted that we were connected as “friends of…

After a protracted campaign to make it happen, Major League Baseball (MLB) agreed to set aside each June 2 to pay tribute to the late Lou Gehrig, the legendary New York Yankees first baseman whose career was cut short by amyotrophic lateral sclerosis (ALS). The inaugural “Lou Gehrig…

Maze Therapeutics is advancing the development of a lead gene therapy candidate for amyotrophic lateral sclerosis (ALS), which works by suppressing the activity of a potent genetic modifier called ATXN2. Genetic modifiers are genes or genetic variants that can increase or reduce the severity of a condition without necessarily…

“I can see clearly now the rain is gone. I can see all obstacles in my way. Gone are the dark clouds that had me blind.” Last week, the Jimmy Cliff version of that Johnny Nash composition played over…

I’m always on the lookout for self-care strategies that help me cope and live with my ALS. Recently, I added two quick and easy skills I call “self-care minis” to my ever-growing list. They help me stay cool and calm when I have a super busy day. Why do I…