Treeway, a biotech company in the Netherlands with a mission to develop a cure for ALS, recently announced promising results of its phase I trial of its lead drug, TW001. TW001 is an oral formulation of edaravone. Radicava®, the most recently FDA approved drug to treat ALS, is an intravenous version of edaravone. The study showed that TW001 was well tolerated and stable, while improving bioavailability compared to Radicava.
Bad things happen to good people every day. That’s just the nature of life. But it doesn’t mean we stop living and loving. My ALS story officially started on a warm fall afternoon in September 2001. I had been having difficulties with speaking and swallowing for several months. After more than two months of seeing about a dozen different medical professionals, and having more tests than one can imagine, I sat in the small examination room of a local neurologist.
Margot Vaughan has been fighting ALS for more than two years. But she hasn’t been fighting alone. “My family is totally devoted to me,” Margot said. “They keep me going and I’m lucky and grateful to have such an amazing family by my side.”
Dawn & Nash are a husband and wife duo called “Dawn Loves Nash.” They’re also artists who are living and sharing their “hippie gypsy pop” music in and around Nashville, Tenn. Influenced by Sting, John Denver, Paul Simon, Bob Dylan, Fleetwood Mac, Willie Nelson, and Patsy Cline, Dawn Loves Nash aspires to help others through music.
unded by The ALS Association, NeuroBANK™ is the patient-centric platform for clinical research for numerous Association programs developed by the Neurological Clinical Research Institute (NCRI) at Massachusetts General Hospital. The platform received the Best Practices Award for Personalized & Translational Medicine at the 2018 Bio-IT World Conference and Expo in Boston earlier this month.
“If I have to be the face of ALS,” Donna Boring said, “it’s not a bad face to have.” Donna was diagnosed with ALS in 2008, at the age of 37. She is one of the heroes in The ALS Association’s new public service announcement (PSA) campaign showing “The Reality of ALS.”
My name’s Aaron, but my friends call me “Bankz.” I’m a 39-year-old husband to Abbie and father to seven-month-old Lincoln. It was a real shock when I received my ALS diagnosis less than six months ago. But now that I’ve had some time to let things sink in, it’s time to make some noise.
A recent study led by Dr. Bjorn Oskarsson from the Mayo Clinic Jacksonville and supported by The ALS Association demonstrated that mexiletine, a drug approved by the U.S. Food and Drug Administration, reduced the frequency and severity of muscle cramps in people with ALS compared to a placebo.
Studies have shown the value of attending a multidisciplinary clinic for a person with ALS, including longer survival, increased quality of life, and improved access to potential therapies. Since 1998, The ALS Association’s national Certified Treatment Centers of Excellence (CTCEs) network has provided ALS care and services in a supportive atmosphere, with an emphasis on hope and quality of life.
The ALS Association is happy to continue our tradition of supporting bright, young scientists in ALS research through our Milton Safenowitz Postdoctoral Fellowship Program. These awards encourage young scientists to enter and, importantly, to remain in the ALS field.