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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Team Challenge ALS Makes Finals of The Basketball Tournament!

Please join us in congratulating Team Challenge ALS for winning last night’s thrilling 2-OT semifinal victory in The Basketball Tournament, a 5-on-5, single-elimination basketball tournament. They play in the final game on Thursday night at 7 pm ET on ESPN. The winning team takes home $2 million!

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Every Fan Adds Up

ALS has always had a connection with baseball. In 1939 when Lou Gehrig stood on the mound, the world became aware of the disease. In 2014, Boston college player Pete Frates inspired the world to take part in the fight against ALS. In 2017, Major League Baseball is supporting The ALS Association’s launch of the Home Health Initiative. Together, we want to raise over $1 million dollars to provide in-home care to individuals and families affected by ALS.

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Update from Brainstorm Cell Therapeutics on Upcoming Phase III NurOwn® Clinical Trial

On July 17th, our partner Northeast ALS Consortium (NEALS) hosted a webinar, “NurOwn® Clinical Development Program,” which comprehensively explained past phase II results, the upcoming phase III study and Israeli Hospital Exemption Program. To give a full picture of the company’s past progress and future endeavors, the webinar was led by leadership at Brainstorm Cell Therapeutics, including President and CEO Chaim Lebovits and Chief Operating and Medical Officer Dr. Ralph Kern. Clinicians involved in the upcoming phase III trial also spoke, including Drs. Robert Brown, Anthony Windebank and Merit Cudkowicz. The Association has partnered with NEALS for over eight years and we are happy to collaborate to disseminate the most accurate, up-to-date information regarding ALS clinical trials.

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