Every Innovation

By Jill Yersak, Ph.D.

It’s been three years since the viral fundraising phenomenon known as the ALS Ice Bucket Challenge, which allowed us to dedicate millions of dollars to our global TREAT ALS™ research program.

Because research takes time, we are now starting to see results of our investments. This is a very exciting time in ALS research!

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Every Scientist: Meet Dr. Tania Gendron

All month, we are featuring stories of individuals who are having an impact in the fight against ALS.

Meet Dr. Tania Gendron, Assistant Professor of Neuroscience at the Mayo Clinic in Jacksonville, Fla. She fights ALS by working hard every day in the lab to find a cure for this devastating disease. Her work focuses on optimizing ALS biomarkers to track and better understand the most common genetic mutation in inherited ALS, called C9orf72.

The ALS Association has supported Dr. Gendron’s work as part of the TREAT ALSTM global research program with the hope to accelerate ALS biomarker progress. We are happy to report that she and her colleagues have made significant advances and recently published a paper in Annals of Neurology titled, “Phosphorylated neurofilament heavy chain: A biomarker of survival for C9orf72-associated amyotrophic lateral sclerosis.” Read more to learn how Tania contributes to ALS research by chipping away at the barriers between getting a drug from the lab and into clinical trials in her fight against ALS.

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Every Mother: Meet Suzy

All month, we are featuring stories of individuals who are having an impact in the fight against ALS.

Meet Suzy Shealy from Columbia, S.C. Suzy is a wife, Gold Star mother (son Army Sgt. Joseph Derrick), grandmother, sister, person living with ALS and a tireless ALS advocate. We recently sat down with Suzy to get to know her and learn how ALS impacts her life.

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Every Father: Meet Tim

All month, we are featuring stories of individuals who are having an impact in the fight against ALS.

Meet Tim Ritter from Myrtle Beach, S.C. Tim is a husband, father, Navy veteran, professor and a person living with ALS. We recently sat down with Tim to learn about the most impactful moments in his life that has defined who he is today.

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A Patient Advocate and Doctor’s Perspective on Clinical Trials: Update on the Retigabine Phase II Trial

Last week, Dr. Brian Wainger of Massachusetts General Hospital and Stephen Winthrop, Chairman of The ALS Association Board of Trustees, gave their unique clinical trial perspectives during the Northeast ALS Consortium (NEALS) webinar titled, “Retigabine Clinical Trial Update & Discussion with ALS Patient Advocate Stephen Winthrop.” For many years, The ALS Association has proudly partnered with NEALS to run ALS centered webinars to disseminate the most up-to-date information to the ALS community. Today’s post discusses the actively enrolling Retigabine clinical trial, which The ALS Association funds, as well as an honest perspective on what it is like to participate in ALS clinical trials.

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Every Opportunity Adds Up

Every contribution – no matter how big – brings us closer to the cure.

This August, The ALS Association is grateful for partners that are helping to support our fight against ALS through providing unique opportunities to give. As shown by the Ice Bucket Challenge – every opportunity adds up! You can:
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Clinical Trial: Amylyx Pharmaceuticals is Now Enrolling in Phase II CENTAUR Clinical Trial

Amylyx Pharmaceuticals, championed by The ALS Association, is currently enrolling up to 132 individuals nationwide for a Phase II CENTAUR (Combination of Phenylbutyrate and Tauroursodeoxycholic Acid) clinical trial to assess the efficacy and safety of AMX0035 for the treatment of ALS. The Neurology Clinical Research Institute (NCRI) at Massachusetts General Hospital and the Northeast ALS Consortium (NEALS) will oversee the trial, and 25 NEALS member medical centers across the United States will participate. The ALS Association, along with ALS Finding a Cure® supported this important trial with a $2.96 million grant.

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