The data platform PatientsLikeMe (PLM) has made its de-identified amyotrophic lateral sclerosis (ALS) patient database available to scientists around the world to advance clinical research in the neurodegenerative disorder. Part of a collaboration between PLM and the Neurological Clinical Research Institute (NCRI) at Massachusetts General Hospital (MGH), the…
PatientsLikeMe ALS contribution expands free PRO-ACT database
Britley Wells and Brian Jeansonne. (Photo courtesy of Britley Wells) This is Britley Wells’ story: Hi there! My name is Britley Wells, and I am a trauma intensive care registered nurse at University Medical Center New Orleans. In early January, I had the privilege of meeting the…
WVE-004, Wave Life Sciences‘ investigational treatment for amyotrophic lateral sclerosis (ALS), significantly reduces toxic proteins associated with C9orf72 genetic mutations, but that doesn’t seem to translate into functional status gains in patients. Based on findings from the Phase 1b/2a FOCUS-C9 trial (NCT04931862), the company has decided to discontinue developing…
A few months after I learned I had ALS, I was invited to participate in a walkathon to help raise funds for the ALS Association. I’m sure my curt reply of “No, thank you” came as a shock to the person inviting me. At the time, I had…
A sizable portion of people with sporadic amyotrophic lateral sclerosis (ALS) carry a genetic mutation known to cause other neurological disorders, a new study shows. “This suggests shared risk factors among these diseases, shared mechanisms that cause nerves to die – and perhaps shared therapeutic strategies in the future,”…
Mary Kate Karam and Brian Jeansonne at Jazz Fest 2023, watching Mumford & Sons, Trombone Shorty, and John Batiste. Incredibly hot, but incredibly fun! (Photo courtesy of Mary Kate Karam) This is Mary Kate Karam’s story: Brian Jeansonne, a father of five, was diagnosed…
A Phase 2b trial of PrimeC for people with amyotrophic lateral sclerosis (ALS) has completed patient enrollment, according to NeuroSense Therapeutics, the therapy’s developer. Called PARADIGM (NCT05357950), the study enrolled 69 adults diagnosed with ALS, ages 18-75, at sites in Israel, Italy, and Canada. The company…
I love inspirational quotes and sayings. Throughout my life, I’ve stumbled upon passages from books or snippets of speeches from public figures and recognized them as a helpful way for me to understand or think about a current challenge in life. In some cases, they’ve served as mantras — easy…
Jodi O’Donnell-Ames founded Hope Loves Company after losing her husband to ALS. (Courtesy of Jodi O’Donnell-Ames) This is Jodi O’Donnell-Ames’ story: The term amyotrophic lateral sclerosis (ALS) was not a part of my vocabulary until May 1995. That’s when my husband, Kevin O’Donnell, was diagnosed with…
Applications are open for the first year of the ALS Canada Kevin Daly Bursary, a grant program for post-secondary students whose lives have been touched by amyotrophic lateral sclerosis (ALS). A $2,500 bursary will be awarded to a Canadian student who’s been accepted into a college or university in…
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