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…
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…
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