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.”

“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.”

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.

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.

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.