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
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 Patti O’Reilly
I was diagnosed with ALS in January 2014, at the age of 53.
I was an oncology nurse for 32 years and had just completed my master’s degree in nursing and passed the boards to become a nurse practitioner when I was diagnosed. Being a nurse practitioner had always been a dream of mine, but I was unable to use my master’s degree at all because of ALS.
Continue reading Guest Post: ‘It Takes A Village’
Ronnie selflessly cared for Linda, his wife of 20 years, throughout her fight with ALS.
“The hardest thing anyone can experience is watching a loved one slowly die [when you] can’t do anything about it,” he said. “It doesn’t matter what disease they have.”
He added, “ALS is [an] ugly disease. It slowly takes away the person we saw being able to take care of themselves and enjoy life. The sad thing is…there is no cure. The person who has ALS just slowly wastes away.”
Linda was diagnosed with ALS on April 16, 2012. She passed away less than 14 months later – on June 8, 2013.
“If it wasn’t for God, I couldn’t have made it through,” Ronnie said. “I pray every day for all the caregivers and have the utmost respect for them.”
He wrote “ALS Experience” after Linda’s death.
Continue reading A Husband and Caregiver’s ‘ALS Experience’
By Russell Mikunda
Before being diagnosed with ALS, I had no idea that veterans are twice as likely to be diagnosed with the disease. Even knowing what I know now, I would still serve my country.
I was in the Navy for eight years, reporting for duty on three different ships during my time in the service. During my second deployment, we were off the coast of Beirut when things started to heat up during the early 1980s.
I’m very proud to be a veteran. The VA (Department of Veterans Affairs) takes good care of me. But sometimes I worry that everybody with ALS doesn’t get that same high level of treatment I do.
Continue reading Guest Post: ‘I Would Still Serve My Country’