I don’t like asking for help, but when it’s for my husband, I’ll do it. Last Friday, after getting my kids out the door for school, they quickly returned to the house. “The car has a flat tire,” my daughter announced. “I’ll drive you,” I responded.
A committee of the European Medicines Agency (EMA) is leaning toward not recommending a conditional approval of Amylyx Pharmaceuticals’ AMX0035 for treating amyotrophic lateral sclerosis (ALS) in the European Union. The drug is already marketed in the U.S. under the name Relyvrio (sodium phenylbutyrate and taurursodiol) and…
On June 3, the Greater Chicago Chapter of the ALS Association will host its 2023 Chicago Walk to Defeat ALS fundraiser, with an aim of supporting patients and families living with amyotrophic lateral sclerosis (ALS). The 1.5-mile event will again take place at Cantigny Park in…
Every once in a while, I have to stop and declare, “I’m spinning way too many plates!” That happens whenever I begin to feel overwhelmed by the number of tasks I’ve set myself up to do while living with ALS. You’ve seen plate spinning, right? It was…
Our first holiday since my tracheotomy. My wife ordered these shirts while I was in the ICU. Since then, these shirts have become a part of who we are. We now are selling them on our website. Love. (Photos courtesy of Brian Jeansonne) This is Brian Jeansonne’s story: I’m…
Allopurinol and carvedilol, two medications respectively used to manage gout and high blood pressure, significantly reduce the chances of developing amyotrophic lateral sclerosis (ALS), Alzheimer’s, or Parkinson’s disease, a new study suggests. “These findings suggest a possible new direction for repurposing or developing medications for neuroprotection,” Brad…
Mary Alice with her husband, Holt. (Photo courtesy of Mary Alice Poling) This is Mary Alice Poling’s story: My name is Mary Alice Poling and my son, Seth, who is 37 years old, has ALS. He has been living with ALS for nine years. If I’m truthful,…
Locanabio‘s investigational therapy significantly reduced the buildup of toxic RNA molecules in amyotrophic lateral sclerosis (ALS) patient cells and mouse models associated with C9ORF72 mutations, according to new data. These RNA products — intermediate molecules that are produced from DNA as a template for protein production — are…
A friend who visited Mayo Clinic in Rochester, Minnesota, for a serious health issue posted a video on social media of a string quartet playing in the towering glass atrium of the Gonda Building there. It brought back memories of when my husband, Todd, and I went to Mayo for…
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…
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