Meet Edward Barbieri: A 2018 Milton Safenowitz Postdoctoral Fellow

Our Milton Safenowitz Postdoctoral Fellowship Program continues to support young scientists and is the only program of its kind specifically funding early ALS postdoctoral fellows.

The awards were founded in memory of Mr. Safenowitz by the Safenowitz family – through The ALS Association Greater New York Chapter. The program encourages young scientists to enter and, importantly, to remain in the ALS field.

We are proud that 76 percent of the postdoctoral fellows we fund go on to start their own labs to continue studying ALS and mentor other young ALS researchers. The rest of our Safenowitz fellowship program graduates go on to careers in the biomedical industry, nonprofits, and medical writing, with many still staying in the ALS space.

This year, we are supporting five new postdoctoral fellows out of a highly competitive applicant pool. Over the next few weeks, we will highlight each fellow – their dedication and unique contributions to ALS research, as well as their interests outside of the lab.

We recently talked with Dr. Edward Barbieri from the University of Pennsylvania to learn about his unique research project aimed at identify particular networks of chaperones that can reverse the toxic effects of ALS-associated proteins in cells.

Continue reading Meet Edward Barbieri: A 2018 Milton Safenowitz Postdoctoral Fellow

Handling Hospital Visits When You Have ALS

Editor’s note: This article was republished with permission from The ALS Association St. Louis Regional Chapter.

Even though ALS is a disease that has its own health implications, people with ALS are not immune from other injuries or medical issues. Individuals with ALS can still get sick or hurt themselves in ways unrelated to the disease.

Or, people with ALS might have complications directly related to the disease that warrants a visit to the hospital.

When an individual with ALS goes to the hospital or the emergency room, they face additional obstacles with hospital staff who may not fully understand how ALS affects a person’s breathing, speech and movement. Extra measures should be taken to ensure people with ALS are cared for in the right way.

Here are some tips on what to look out for and how to prevent misunderstanding in the hospital or emergency room.

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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-Milwaukee 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