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.
Genentech, a member of the Roche group, has initiated a Phase I clinical study evaluating GDC-0134, an oral investigational medicine designed to block dual leucine zipper kinase (DLK), for the potential treatment of ALS.
On May 14 - 16 more than 600 advocates took part in a very successful National ALS Advocacy Conference here in Washington, DC. Of the 600 advocates, 130 were people living with ALS. On Sunday and Monday, national experts and officials briefed participants on The ALS Association priorities and other “hot topics” that they might encounter in their congressional meetings and Chapter Executives prepared their state delegations for Hill meetings.
The ALS Association is proud to announce three large research organizations -- Project MinE USA, Answer ALS and the New York Genome Center (NYGC) -- will be working collaboratively toward their mission for treatments and a cure for ALS.
The June issue of Scientific American on newsstands this month features, “Unlocking the Mystery of ALS,” which details the significant advances of ALS research over the years. The authors, Drs. Leonard Petrucelli at the Mayo Clinic in Jacksonville and Aaron Gitler at the Stanford University School of Medicine, thoughtfully explained the complicated science behind ALS, while weaving a story of its breakthroughs and the steps needed to get to the ultimate goal – an end to ALS.
