2017’s BIGGEST Successes by our ALS Advocate Community

We bring the ALS community together to speak with one voice to increase awareness, advocate for research funding, and educate legislators – impacting thousands of people with ALS and their families. This advances out mission to discover treatments and a cure, to serve, advocate for, and empower people living with ALS to live their lives to the fullest.

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‘Super Positive’ ALS Advocate Inspires Those Around Him

Doug Clough is a fearless ALS advocate from Gilbert, Ariz., who has made it his mission to make a huge impact on people living with ALS. Despite his ALS diagnosis in April 2014, he keeps going. He is involved in ALS advocacy in every way possible, from participating in The ALS Association National Advocacy Day to serving on the National ALS Registry task force to becoming a Northeast ALS Consortium (NEALS) Research Ambassador to participating in an ALS clinical trial, and this year being awarded the Iron Horse Award. Today, we are pleased to be joined by Doug who shares his story how he uses his endless energy to live life to its maximum potential.

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Air Force Veteran Fighting ALS One “Shy-Dye” Shirt at a Time

Diagnosed with ALS in February 2011 with bulbar ALS, Mickey Johnston is a U.S. Air Force Veteran. He lives in Atlanta, Ga. with his wife and caregiver, Debbie. They have been married for 37 years. We are thrilled to share Mickey’s story of how he started the “Shy-Dye Love Ministry” that brightens the lives of people living with ALS all over the world.

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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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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 Fan Adds Up: Meet Shelly

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

Meet Shelly Hoover. Shelly is a wife, mother, grandmother, daughter, sister, friend, educator, Giants baseball fan, military veteran and ALS advocate. When you meet Shelly, there are two things that immediately become apparent, her joy for life and her passion for working to advocate for people with ALS.  Her accomplishments are many. Since her diagnosis, she has volunteered, advocated and fundraised tirelessly. She and her family are why we fight for a cure!

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