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.
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.
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!
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.
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.
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.
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.”
CENTAUR is a 24-week, randomized, double-blind, placebo-controlled Phase II clinical trial. The trial’s primary objectives are to evaluate the safety and tolerability of AMX0035 and assess the drug’s impact on disease progression as measured by the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) over the 24-week study period.
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!
Meet Lauren Duski and Ann Gillis. Lauren is a talented musician, storyteller, songwriter and devoted caregiver to Ann Gillis, an independent filmmaker living with ALS. With Ann’s encouragement and generosity, Lauren uprooted her life to pursue a country music career and become the successful musician she is today.
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!
The ALS Association has worked on developing and implementing new educational tools to meet the needs and requests of our community. We are pleased to announce and highlight two of our newest projects - our resource guide series translated into Spanish and the Key Medical Information App - which are now available.
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.
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
Major League Baseball today announced its support of The ALS Association’s ALS Home Health Initiative by launching the MLB Fights ALS campaign, a league-wide fundraising effort set for August 1st-5th.
In the July 13, 2017 issue of The New England Journal of Medicine, leaders in the ALS field, Drs. Robert Brown of University of Massachusetts Medical School and Dr. Ammar Al-Chalabi of King’s College London, came together to write a comprehensive ALS review.
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.
Today, we sat down with Dr. Javier Jara, Research Assistant Professor at Northwestern University Feinberg School of Medicine, who just published groundbreaking work focused on brain inflammation caused by ALS.
Today, we are pleased to be joined by a wonderful ALS advocate Rob Robertson from Belleville, Ill. Rob proudly served our country in the U.S. Army for many years that included time in an elite fighting force “The Screaming Eagles.” He and his family faced many challenges over his lifetime, but nothing could have prepared him for his ALS diagnosis.
