New Education Guides Help to Lessen Fear, Uncertainty for Youngest Affected by ALS

ALS can be confusing, scary, embarrassing, and overwhelming – for people living with the disease as well as for the youth within their families. Young people need age-appropriate details about ALS to help reduce some of the fear and uncertainty surrounding the disease.

That’s why we created our new youth education guides.

Many young people fear the unknown and may feel responsible for helping their loved one. Children often feel helpless and don’t understand what is happening to their loved one with ALS.

Children and teens who provide direct caregiving to their loved one with ALS, and emotional support to adults and siblings within the family, can struggle with feelings of isolation and depression and even a decreased self-worth.

Preteens and teenagers may have difficulty explaining ALS to their friends and often don’t know how they can help their loved one living with the disease.

And adults and other family members often grapple with how they can explain the disease openly and honestly.

Continue reading New Education Guides Help to Lessen Fear, Uncertainty for Youngest Affected by ALS

Looking Ahead: The Carmen Schentrup ALS Research Fund Inspires Hope and Progress Toward a Cure

Carmen Schentrup had a dream: a world without ALS. Her career aspiration was to become a medical researcher and to be part of The ALS Association’s work to cure ALS.

Tragically, Carmen’s life was cut short in the horrific Parkland shooting last year. However, her dream to contribute to a cure is being realized in a significant way.

Carmen’s birthday is today, February 21. She would have been 18 years old.

Continue reading Looking Ahead: The Carmen Schentrup ALS Research Fund Inspires Hope and Progress Toward a Cure

A Look Back: Our Largest-Ever Clinical Conference Re-Confirms We’re ‘All in This Together’

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’

Fran McClellan Awarded the Lawrence A. Rand Prize

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

Terry Bradshaw Teams Up with The ALS Association to Raise Awareness of ALS

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

Collaboration and Hope in Glasgow: A Look Back at the Annual ALS/MND Meetings and Research Symposium

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

Guest Post: ‘Remember Me as Being a Help to Others’

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’