Note: This story has been updated March 6, 2025, to correct a quote from Mindy Henderson, MDA vice president of disability outreach and empowerment. The Muscular Dystrophy Association (MDA) is once again hosting its annual gathering, the MDA Clinical & Scientific Conference. The 2025 event will take place…
As a former pastor and chaplain, Deb found the strength to transform the fear and frustration from her diagnosis into hope and help for others with ALS. Discover how Deb learned to celebrate every new day as a gift.
Measuring blood levels of neurofilament light chain, or NfL, a biomarker of nerve damage, may help in diagnosing amyotrophic lateral sclerosis (ALS), and in predicting the risk of death among people with the neurodegenerative condition, a new study shows. This biomarker showed substantially better accuracy for both ALS diagnosis…
Fat molecules called polyunsaturated fatty acids, or PUFAs, can help lessen nerve damage in amyotrophic lateral sclerosis (ALS), according to a study of fruit flies and cell models. Previous studies have shown that consumption of omega-3 fatty acid, a type of PUFA, is associated with a lower risk…
Lines from a Shania Twain song have been running through my head the past few days: “You’re still the one I run to/ The one that I belong to/ You’re still the one I want for life.” The lyrics remind me of how my husband, Todd, and I…
Clene is collaborating with APST Research to further explore how CNM-Au8 affects levels of neurofilament light chain (NfL) among amyotrophic lateral sclerosis (ALS) patients being treated in expanded access programs (EAPs). The joint effort is intended to support the accelerated approval of CNM-Au8 for ALS, which Clene intends…
Before ALS entered my life, I barely noticed how easily I completed simple, everyday tasks. But living with ALS can be tiring, and it makes everything — including the little things, our run-of-the-mill habits — feel difficult and tedious. I reached the point where I contemplated giving them up…
The Muscular Dystrophy Association (MDA) has rolled out its St. Patrick’s Day fundraising campaign, MDA Shamrocks — the largest such campaign in the U.S. marking this day — to raise money for research, patient care, and advocacy for amyotrophic lateral sclerosis (ALS) and other rare neuromuscular…
The ALS Association’s Walk to Defeat ALS fundraising event this year is marking 25 years of bringing together people with amyotrophic lateral sclerosis (ALS) and their families to offer support and raise funds for advancing research and improving care for those living with the disease. With a total…
The ALS Association has launched a free resource to help people with amyotrophic lateral sclerosis (ALS) and their families navigate health insurance denials and appeals — with the tool’s goal to help patients get coverage for critical care. Dubbed the ALS Insurance Navigator, the tool delivers detailed…
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