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
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
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
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.
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.
The ALS Association is ramping up its efforts to make sure people with ALS who rely on Medicare have access to home health care benefits.
“Many people in the community, including people with ALS, people within our chapters, and our clinical partners, have told us about the serious and persistent challenges faced by Medicare beneficiaries with ALS,” said Dr. Neil Thakur, executive vice president for mission strategy at The ALS Association. “Many such beneficiaries, despite being fully qualified, are turned down for the home health benefits they deserve. Other beneficiaries are able to receive Medicare home health but deal with inadequate hours of service and inappropriate termination from care.”
Continue reading People with ALS Should Have Access to the Medicare Home Health Benefits They Deserve
Mitsubishi Tanabe Pharma America (MTPA) will present initial data on efforts to create an oral version of edaravone, a key drug in the treatment of ALS that is currently only available intravenously, during the International Symposium on ALS/MND in Glasgow, Scotland. The symposium will be held Dec. 7-9. MTPA is expected to present results that demonstrate that oral edaravone is processed in the body in the same manner as the infused formulation.
An intravenous formulation of edaravone, Radicava, was approved by the U.S. Food and Drug Administration to treat ALS in May 2017.
“We are happy to learn that MTPA is working on an oral formulation of Radicava. This new formulation could make it easier for people living with ALS to take the drug. As we learn more, we will be sure to update our community,” stated Dr. Neil Thakur, executive vice president of mission strategy at The ALS Association.
Continue reading Mitsubishi Tanabe Pharma America to Present Data Showing Oral Version of Edaravone Processed Similarly to IV Version in Patients