A friend from a lifetime ago rolled down an accessible path leading to Lake Superior in my husband’s backup power wheelchair, and I experienced a sense of déjà vu after we turned down a boardwalk trail through the woods. My husband, Todd, was able to traverse this trail in McLain…
Committing to be out of the house is tricky because my husband, Todd, has ALS, making him paralyzed below the neck and requiring noninvasive ventilation. As long as his breathing is going well, I can run errands and attend events that aren’t more than 15 minutes away. Longer…
When Francisco was diagnosed with ALS he knew it would be an uphill battle, but what he didn't know was the journey it would take him on. Discover how Francisco found the courage to move forward in the face of ALS.
My daughter, Sara, is beginning her freshman year at a university a couple hours from us, and last Saturday was her day to move into the dorms. I had planned to help her move, so weeks ago I lined up a daytime caregiver for my husband, Todd, who has…
The Muscular Dystrophy Association (MDA) is accepting applications for its Advocacy Collaboration Grant program, which supports projects from organizations working to improve the lives of people with neuromuscular diseases such as amyotrophic lateral sclerosis (ALS). Applications for this year’s program are open until Oct. 18, and…
The Muscular Dystrophy Association (MDA) and the International Association of Fire Fighters (IAFF) are teaming up once again, launching more than 420 “Fill the Boot” events this year to raise funds for research and care for people with neuromuscular diseases, including amyotrophic lateral sclerosis (ALS). The fundraising initiative will…
Last week on NPR’s “Morning Edition,” correspondent Ashley Westerman talked about Ukrainian women getting manicures. “It’s just part of looking as good as you can. It’s a matter of hygiene for some but mostly a way of feeling normal in wartime.” The piece resonated with me because I’ve…
A gene therapy aimed at stabilizing connections between motor nerve cells and interneurons — a type of cell that regulates motor nerve cell activity — eased motor dysfunction and promoted motor nerve cell survival in a mouse model of amyotrophic lateral sclerosis (ALS), according to a study by European…
A month ago, one of my husband’s nighttime caregivers gave notice that she won’t be able to work beyond the summer, and our search for her replacement began. I asked Todd’s other caregivers to spread the word, I posted on my Facebook page about it, and Todd reached out to…
Clene will soon meet with the U.S. Food and Drug Administration (FDA) to discuss the potential pathway to accelerated approval for CNM-Au8, the company’s experimental therapy for amyotrophic lateral sclerosis (ALS). Ahead of the meeting, the company has submitted new data to the agency, including the…
