By Stephen Kauffman
Living with ALS since 2012
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.
My parents and my sister were just incredible. They helped me maintain my independence and encouraged me to keep working and living my life, while navigating through the challenges of the disease.
My dad also joined the volunteer leadership for The ALS Association, to help raise awareness and support for others in the ALS community. Their love and belief in my abilities was so important to my sense of self and autonomy as a young man.
Then, I met Jeni in 2014 through an online community that we were both a part of. Our interactions started small through email conversations, text messages, and phone calls. We discovered we shared many common interests. Our communications with each other became almost daily and I found myself having strong romantic feelings for her.
Continue reading Guest Post: A True Love Story
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.
“One of the beautiful things, I think, about the Clinical Conference is that everybody’s really all in this together and we’re all trying to do everything we can for the patients and their families,” Dr. Melinda Kavanaugh, MSW, LCSW with the Helen Bader School of Social Welfare at the University of Wisconsin-Madison in Milwaukee, Wisconsin, said.
Attendees of the three-day conference include physicians, speech-language pathologists, assistive technology professionals, physical therapists, occupational therapists, registered dietitians, respiratory therapists, nursing professionals, and social workers.
“The [Clinical Conference] is […] an exceptional opportunity for folks who are across disciplines, for people who are really hands-on, deeply engaged with patients and caregivers in the community [to] really learn from each other in a very non-intense or non-threatening environment,” Dr. Kavanaugh added. “Sometimes research symposiums can be pretty overwhelming.”
Continue reading A Look Back: Our Largest-Ever Clinical Conference Re-Confirms We’re ‘All in This Together’
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’