Every Legacy Adds Up: Meet the Barnetts

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

Perhaps no family has had as great an impact, for as long a period of time, in the fight against ALS as the Barnett family.

Larry Barnett, Sr., served as the founding chairman of The ALS Association, which was formed when the ALS Society of America (of which Barnett was chairman) merged with the National ALS Foundation in 1985.

“There’s so much more strength in unity,” said Barnett, Sr., who served as The ALS Association chairman for four years. “We can do so much more working as one.”

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ALS Advocacy Victory: Access to Complex Rehabilitation Technology Preserved

As ALS progresses, people living with the disease heavily depend on complex rehabilitative technology (CRT), especially their personally customized power wheel chairs. The ALS Association played a critical role both through direct lobbying and grassroots advocacy to win support for legislation to convince the Centers for Medicare and Medicaid Services (CMS) to abandon plans to apply competitive bidding to CRT. This makes it possible for people living with ALS to continue to obtain the CRT equipment that is customized to their needs.

CMS made this decision after bipartisan legislation, Protecting Beneficiary Access to Complex Rehab Technology Act of 2017 (S. 486/H.R. 1361), won the support of 105 Representatives and 22 Senators. The ALS Association unwaveringly worked to achieve this success by making this legislation a priority at the National ALS Advocacy Conference and encouraging advocates to contact their Members of Congress. Read more to learn about this exciting legislative win.

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Every Advocate Adds Up: Meet Larry

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

Meet Larry Harms. Larry is a father, grandfather, decorated Air Force veteran and tireless ALS advocate from Colorado. When you meet Larry, his wonderful sense of humor, optimism and love for life is immediately apparent. We recently sat down with Larry and learned how determined he is to live life to the fullest despite his diagnosis.

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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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