Meet Roger Craig, a three-time Super Bowl Champion and dear friend of Dwight Clark, who was recently diagnosed with ALS. Learn how Roger plans to support Dwight in his fight against ALS.
Our friend Ted Harada passed away this week. Many of you may have known him. Ted was first diagnosed with ALS in August 2010 and immediately became a tireless advocate, volunteer, and voice of the ALS community.
On some occasions, the ALS Association takes a public stance on the effectiveness of an experimental therapy. This is never easy, as there is rarely universal certainty about scientific research or the findings of individual research studies. We consult with outside independent experts before taking any position. If the drug sponsor is unwilling to provide the sufficient level of information to answer the questions we have and our independent reviewers have, we will not take a position on how well an experimental treatment works. We will simply continue to urge the FDA to move forward as quickly as possible, staying consistent with its 2019 Guidance on ALS clinical trials.
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.
“We are grateful to Cytokinetics for their partnership and transparency, enabling the global research community to leverage these data in their ongoing analyses and research activities,” said Neil Thakur, Ph.D., Chief Mission Officer at The ALS Association.
This week, The ALS Association commemorates Feeding Tube Awareness Week, an opportunity to recognize the important role that feeding tubes can play in the lives of people with ALS.
The ALS Association announced today that Jinsy Andrews, M.D., Larry Falivena, Ken Menkhaus, Ph.D., Kevin Spinella, Bill Thoet, and Dave Van de Riet have joined its national Board of Trustees. Both Menkhaus and Falivena are living with ALS, while Andrews is a neurologist at Columbia University. Both Spinella and Van de Riet lost their fathers to ALS and Thoet rejoins the Board after previously serving as Chairman.
We sat down with Dr. John Landers, professor of Neurology at the University of Massachusetts Medical School, to discuss the recent discovery of the newest ALS gene, KIF5A, made possible by The ALS Association funding through ALS Ice Bucket Challenge donations. Dr. Landers is the co-leader of the U.S. arm of Project MinE, which is the largest ALS whole-genome sequencing effort of its kind. The discovery findings were published in the journal Neuron.
My name is John Mankowski and I have ALS. I am sharing my story to tell you why I Walk to Defeat ALS, and the direct impact you have when you walk too.
ALSUntangled, an award-winning website dedicated to helping people with ALS figure out whether alternative and off-label treatments are effective and appropriate, has created a list of 10 red flags people with ALS should be aware of when considering off-label treatments they read about on the Internet.