As assistant professor of Neuroscience at the Mayo Clinic in Jacksonville, Fla., I fight ALS by working every day in the lab to find a cure for this devastating disease. My work focuses on optimizing ALS biomarkers to track and better understand the most common genetic mutation in inherited ALS, called C9orf72.
It is with heavy hearts that we share that Stephen Winthrop, Chair of The ALS Association Board of Trustees and person with ALS, died peacefully early Monday morning. Our hearts are with his wife, Jane, and their two daughters.
In 2018, many new research discoveries and collaborations accelerated the momentum toward finding treatments and a cure for ALS. We helped lead the way by awarding new grants to top scientists and clinicians all over the world.
The ALS Association joined 37 patient groups opposing a decision from a federal court in Texas that declared the Affordable Care Act (ACA) unconstitutional. The Texas v. United States decision is expected to be appealed to the U.S. Court of Appeals for the Fifth Circuit.
The ALS Association is proud to be the first investor in antisense technology, dating back to 2004 when antisense was just an idea in Dr. Don Cleveland’s lab at University of California San Diego (UCSD). Fast forward to 2018 and we are seeing promising results in antisense drugs targeting the two most common causes of inherited ALS, mutations in the SOD1 and C9orf72 genes.
Dr. Brian Wainger from the Massachusetts General Hospital (MGH) presented initial top-level results from a recently completed phase II clinical trial of ezogabine (retigabine) on motor neuron excitability (NCT02450552). The study, supported by The ALS Association, met its main goal of quantifying a reduction in motor neuron excitability in people with ALS following treatment. Results were presented during the 29th International Symposium on ALS/MND in Glasgow, Scotland, last week.
I was diagnosed with ALS in January 2014, at the age of 53. I was an oncology nurse for 32 years and had just completed my master’s degree in nursing and passed the boards to become a nurse practitioner when I was diagnosed. Being a nurse practitioner had always been a dream of mine, but I was unable to use my master’s degree at all because of ALS.
People living with ALS come first in everything we do. We’re dedicated to providing people fighting ALS and their families and friends with the critical information, support, and resources they need to live full lives and better meet daily challenges.