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.
We’d like to extend a huge thank you to the more than 570 ALS Advocates who participated in our 2018 National ALS Advocacy Conference in Washington, D.C., this week. Nearly every state in the country was represented and nearly half of the participants were attending for the first time.
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.
Each year we go to Capitol Hill to ask for federal funding for ALS research. We ask members to support appropriations for the National ALS Registry at the Centers for Disease Control, the ALS Research Program at the Department of Defense, and ALS research being done through the National Institutes of Health.
Jason Walker believes his greatest accomplishments have come since his diagnosis with ALS – specifically, being a husband and a father. He met his wife, Annie, three years into his ALS diagnosis and they started dating a year later. They were married in 2014.
Thirty-seven-year-old Melissa is a mother to Anthony (14) and Lauren (9). She’s been living with ALS for two years. “I can’t say that I parent any different [since being diagnosed with ALS],” Melissa said. “As a parent, you have to pick and choose your battles and I’ve never been one to sweat the small stuff. But I can see how much my diagnosis has made my children grow and mature.”
“I don’t know how I would have done this without your guidance.” Joumana Baroody heard words like these many times throughout the nine years she worked as a nurse at the ALS Clinic at the University of Chicago. They were spoken by people diagnosed with ALS and their families and caregivers.
I’m proud to be the third person profiled in this series, and I’m happy to be able to tell you my story and why I continue to fight. ALS is a devastating disease. There’s no way to sugarcoat it. While the statistics say the disease typically affects people between the ages of 40 and 70, it can strike anyone at any time, even someone as young as 16 years old.
Biohaven Pharmaceuticals, Inc. initiated an expanded access program (EAP) of BHV-0223 drug, a sublingual, lower dose formulation of Rilutek® (riluzole). The drug uses a Zydis® orally dissolving tablet technology, which does not require swallowing or additional fluids. Riluzole is the first drug approved by the U.S. Food and Drug Administration to treat ALS. It prolongs life approximately three months.
David is originally from Rockwall, Texas, and is now on what he calls “an extended stay in New Haven, Connecticut.” He has lived with ALS for more than 15 years.
This is the first profile in that series, and it’s written in the volunteer’s own words. Michelle Reynolds Gray has been volunteering to help people with ALS in the St. Louis, Mo., area for more than six years. I met my first person with ALS in early 2012, a 59-year-old man named John. When we met, he was “locked in” and couldn’t respond to me in any way except with tears.
Young people across the country are embodying the “Raise Your Voice” spirit for ALS Awareness Month through the Iced Tea Challenge to support The ALS Association. Yesterday, Iced Tea Challenge campaign organizer Rebecca Wetzel appeared on the “TODAY” show to discuss how youth can be more involved in philanthropy and raising awareness for ALS.
Researchers around the world working together for treatments and a cure for ALS are a main reason why we’re on the verge of changing the nature of the disease forever. As part of National ALS Awareness Month, we sat down with two ALS researchers at Johns Hopkins University in Baltimore who are funded by The ALS Association.
The 70th Annual American Academy of Neurology meeting, held in Los Angeles last week, provided an opportunity to check in on antisense therapies and the continued dividends from The ALS Association’s early investment in the technology.
We’re excited to kick off National ALS Awareness Month. The next 31 days will be dedicated to education about the disease and the work happening around the world to find a cure, and to advocating for people with ALS and their caregivers. This year, we’re asking you to Raise Your Voice to elevate the fight against ALS.
At last week’s 70th Annual American Academy of Neurology (AAN) Meeting in Los Angeles, neuroscientists and neurologists from all over the world came together to present their important work and learn from each other. We are proud that many top ALS researchers we support attended and presented a wide range of research, on topics ranging from environmental risk factors to work leading up to clinical trials.
Neuraltus Pharmaceuticals, Inc. reported disappointing results from its phase II clinical trial studying the impact of an immune regulator, NP001, in people living with ALS who had increased levels of inflammation. The company presented the negative results during the 70th Annual American Academy of Neurology Meeting in Los Angeles.
Dr. Timothy Miller, the David Clayson Professor of Neurology from the Washington University School of Medicine in St. Louis accepted the 2018 Sheila Essey Award for ALS Research April 23 at the American Academy of Neurology 70th Annual Meeting in Los Angeles.