New Jane Calmes ALS Scholarship Fund Helps Students Financially Impacted by ALS Pursue Higher Education

The ALS Association is pleased to announce a new scholarship program that will fund up to $5,000 per year for at least 30 students whose personal or family finances are compromised by the financial burden of ALS.

The Jane Calmes ALS Scholarship Fund was established by Mark Calmes, vice chair of The ALS Association’s National Board of Trustees. The scholarship fund is named in honor of his late wife, Jane, who fought ALS for eight years and passed away in August 2017.

“Jane amazed me every day,” Mark says. “She was a fighter who battled three illnesses in a row – a silent heart attack, breast cancer, and then ALS. After she died, I began to think of ways to honor her courageous spirit and compassion. The idea of a scholarship program resonated with me because Jane was always keen on the lifelong benefits provided by education.”

Continue reading New Jane Calmes ALS Scholarship Fund Helps Students Financially Impacted by ALS Pursue Higher Education

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

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

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

We Helped Support Over 20,000 People with ALS This Year

People living with ALS come first in everything we do. We’re dedicated to providing people fighting ALS and their families and friends with the critical information, support, and resources they need to live full lives and better meet daily challenges.

Our chapters help people living with ALS and their families across the country through our equipment loan closets, support groups, augmentative communication and assistive technology program, caregiver support, and education and outreach.

We also collaborate with the best ALS physicians and clinics in our service areas to help ensure that people living with ALS have access to specialized multidisciplinary care.

Here are just a few ways we provided critical assistance to those living with ALS and their families in 2018:

  • More than $4 million in grants were provided through our Certified Center Program
  • Nearly 9,000 people were served specifically through our Certified Treatment Centers of Excellence and Recognized Treatment Centers
  • More than 2,400 veterans received assistance through our nationwide chapter network

Check out our latest infographic to discover all the ways we made a difference to the more than 20,000 people with ALS we served this year. (You can also view the infographic on our website here.) These efforts are essential in improving the quality of life for people fighting ALS.

CareServices-Infographic-2018-FINAL-blog

We need your help TODAY to continue to provide the best care across the country. Your tax-deductible gift will allow us to continue these crucial services into 2019. We can’t do it without you!

Thank you for your support – for giving hope and making an impact on the lives of people affected by ALS.