Sometimes I find perspective when I listen to other rare disease communities. ALS News Today is just one publication of its parent company, Bionews, which hosts more than 50 online websites devoted to rare and chronic diseases. Last week, I got on Cystic Fibrosis News Today to catch up…
Reading others’ stories reminds me that I’m not alone
Researchers at Northwestern University received a $7.3 million research grant from the National Institute on Aging to expand their work on NU-9, which has shown promise in amyotrophic lateral sclerosis (ALS) preclinical studies, and explore its effectiveness in other neurodegenerative diseases. The institute is a division of the National…
Kadimastem, the developer of the experimental amyotrophic lateral sclerosis (ALS) therapy AstroRx, is merging with NLS Pharmaceutics to combine efforts to advance both companies’ drug portfolios. The combined company will focus on moving AstroRx and a diabetes drug being developed by Kadimastem through clinical trials. A Phase…
Mutations in the mitochondrial genome — the set of DNA instructions found inside mitochondria, the powerhouses of cells — may be linked to amyotrophic lateral sclerosis (ALS), a study found. The findings open the door for new ways of diagnosing and treating the disease, researchers said. “We aren’t saying…
This November, I AM ALS, a nonprofit dedicated to helping people — both patients and family members — affected by amyotrophic lateral sclerosis (ALS), is launching a campaign focused on supporting caregivers. The new initiative aims to raise awareness of the unique challenges faced by ALS caregivers. Throughout…
Sometimes people reach out to me or my husband, Todd, to get our advice on building an accessible home. We share with them what we’ve learned over the past 14 years with his ALS and progressive disability. After Todd was diagnosed, we realized that we’d need to sell…
The government of Ontario has committed CA$13 million (around $9.36 million) over three years to provide critical and comprehensive care to people with amyotrophic lateral sclerosis (ALS) who live in the Canadian province. The funding, which was announced in Ontario’s 2024 Fall Economic Statement, will help…
Leal Therapeutics has raised $45 million to continue advancing its pipeline of drugs for diseases of the brain and spinal cord, including a promising new therapy for amyotrophic lateral sclerosis (ALS). The financing round, which follows an earlier $39 million investment, will help Leal move its two lead…
I collect drinking straws. Not just any old straws, mind you, but long, wide-barreled plastic straws. My assortment includes several unusual straws as well, and they all help me drink beverages with ease even though I have dysphagia, or difficulty swallowing — a symptom of ALS. As I wrote…
Biotech company Auttx has received a $125,000 grant to advance the development of new molecules that aim to restore normal RNA processing in people with amyotrophic lateral sclerosis (ALS), potentially leading to new treatments for ALS. Messenger RNAs are intermediate molecules that are produced when genes are read to…
Recent Posts
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