A sad update about #VoiceYourLove ambassador Ryan Farnsworth: It is with heavy hearts that we share the news that Ryan Farnsworth died the evening of February 19, surrounded by his family. As active ambassadors of The ALS Association’s mission and vision, Ryan and his family selflessly moved us closer to our vision to create a world without ALS. Read more here.
This is the first in a series of posts from people living with ALS who are featured in our #VoiceYourLove campaign. Before I was diagnosed with ALS, I didn’t know much about it - just that it was a debilitating disease. I was 27 years old and had no idea what to expect. I certainly didn’t plan for how much love it would bring into my life.
Every two years, hundreds of ALS health care professionals come together to discuss new trends, share best practices and guidelines, exchange ideas and successes, and talk about challenges and potential solutions. To capture the collaborative power of the 2018 event in Fort Worth, Texas – our largest-ever Clinical Conference, with more than 500 attendees – we put together a short video highlight reel.
At our most recent clinical conference, we honored Frances (Fran) McClellan with the Lawrence A. Rand Prize. The award recognizes the courage, passion, integrity, and commitment of people serving the ALS community as volunteers, health care professionals, educators, communicators, or in other ways contributing to the quality of life of people living with ALS. It was established by Lawrence Rand, a former chairman of the Association’s Board of Trustees who played a major role in laying the cornerstone of what is now The ALS Association.
Today we launched a new public awareness campaign featuring Hall of Fame quarterback and FOX Sports announcer Terry Bradshaw that raises awareness of ALS and the progress that has been made since the ALS Ice Bucket Challenge in 2014.
We had the pleasure of joining ALS scientists, clinicians, health care professionals, industry and advocacy partners, and, most importantly, people with ALS and their families at the annual events hosted by the International Alliance of ALS/MND Associations and the MND Association last month. It’s always a great opportunity to come together and learn from each other.
My interest in photography began when I was the high school yearbook photographer. I really don’t know why I volunteered because, at the time, I didn’t even own a camera.
As assistant professor of Neuroscience at the Mayo Clinic in Jacksonville, Fla., I fight ALS by working every day in the lab to find a cure for this devastating disease. My work focuses on optimizing ALS biomarkers to track and better understand the most common genetic mutation in inherited ALS, called C9orf72.
It is with heavy hearts that we share that Stephen Winthrop, Chair of The ALS Association Board of Trustees and person with ALS, died peacefully early Monday morning. Our hearts are with his wife, Jane, and their two daughters.
In 2018, many new research discoveries and collaborations accelerated the momentum toward finding treatments and a cure for ALS. We helped lead the way by awarding new grants to top scientists and clinicians all over the world.