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.
Fran is a passionate advocate and provider for people living with ALS. She serves the ALS community as both a nurse coordinator for our Certified Center of Excellence at the Louis Stokes Cleveland VA Medical Center (Cleveland VAMC) and a board member for our Northern Ohio Chapter.
Keep reading to learn more about Fran and the work she does in the fight against ALS.
Continue reading Fran McClellan Awarded the Lawrence A. Rand Prize
Hall of Fame quarterback fulfills dying fan’s last wish that he become ALS spokesperson
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.
“ALS is a terrible disease that has taken far too many Americans, including several former NFL players,” said Terry. “I’m honored to be fighting for all those living with ALS and their family members. We desperately need the public’s support to keep the momentum going.”
Two of the videos released today feature Terry and Pat Quinn, who co-founded the ALS Ice Bucket Challenge five years ago.
Continue reading Terry Bradshaw Teams Up with The ALS Association to Raise Awareness of ALS
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.
Here are some highlights from the three events – the Annual Alliance Meeting, the Allied Professionals Forum, and the International Symposium on ALS/MND – which were held in Glasgow, Scotland (UK), December 4-9.
Continue reading Collaboration and Hope in Glasgow: A Look Back at the Annual ALS/MND Meetings and Research Symposium
By Rick Fisher
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.
My father was a big 8mm movie guy, but he never used a still camera. After I was selected as the yearbook photographer, my father bought me my first 35mm camera.
Between high school and 1998, I was a casual amateur photographer. When digital was introduced, I got excited about the technology and renewed my interest.
Continue reading Guest Post: ‘Remember Me as Being a Help to Others’
By Tania Gendron
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.
The ALS Association has supported this work as part of the TREAT ALS™ global research program to accelerate ALS biomarker progress.
I’m happy to report that my colleagues and I have made significant advances and recently published a paper in Annals of Neurology titled, “Phosphorylated neurofilament heavy chain: A biomarker of survival for C9orf72-associated amyotrophic lateral sclerosis.”
Continue reading Guest Post: ‘Give ALS Researchers Hope’
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.
Here are just a few of the biggest advances in ALS research this past year that give us hope.
Continue reading Projects We Funded in 2018 Accelerated Momentum Toward the Search for Treatments and a Cure
The ALS Association joined 37 patient groups opposing a decision from a federal court in Texas that declared the Affordable Care Act (ACA) unconstitutional. The Texas v. United States decision is expected to be appealed to the U.S. Court of Appeals for the Fifth Circuit.
The ACA will remain in place during the appeals process, including:
• Coverage protections for pre-existing conditions like ALS.
• Essential health benefits, including coverage of prescription drugs, chronic disease. management, rehab and habilitative services, and mental health.
• Coverage through Medicaid in states where the program was expanded.
• 2019 health insurance plans purchased through the marketplace (HealthCare.gov).
The ALS Association unequivocally opposes any effort to eliminate protections for people with ALS and urges Congress and the U.S. Court of Appeals for the Fifth Circuit to safeguard protections for people with chronic diseases like ALS.