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ALS Association
Celebrating International Day of Women and Girls in Science with Dr. Allison Ebert
​Each year on February 11, the world celebrates International Day of Women and Girls in Science Day. This year we’re shining a spotlight on Dr. Allison Ebert, Ph.D., Leadership Team Member at The ALS Association Wisconsin Chapter & professor at the Medical College of Wisconsin. Dr. Ebert breaks down the challenges of finding effective therapies for people living with ALS and the important work happening in her lab.
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ALS Association
ALS Responds to NIH Request for Input: Speed Matters in ALS Research
The National Institute of Neurological Disorders and Stroke (NINDS) issued a request for input recently to help guide its work supporting ALS research. The ALS Association is submitting input telling the agency that speed matters. We are encouraging NINDS and the rest of NIH to focus to find ways to use research to advance the health of people with ALS as quickly as possible.
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ALS Association
Feeding Tubes: What You Need to Know to Help in Decision Making
In most people’s journey living with ALS, they will be faced with the decision of using a feeding tube to help maintain proper nutrition and enhance their quality of life. The following resources have been developed to provide you with the knowledge you need to help make this decision with the minimum amount of stress and difficulty. 
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ALS Association
ICER Set to Review ALS Treatments Like AMX0035: Here’s What We Know
The Institute of Clinical and Economic Review, commonly known as ICER, has opened a review of AMX0035 to determine the cost-effectiveness of the drug. The ALS Association is committed to making sure ICER’s review does not discriminate against people with ALS and that its analysis does not prevent people with ALS from accessing promising treatments.
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ALS Association
Mark Kandel: Living Life to the Fullest with ALS
Despite all that ALS has taken from me, I still try to maintain a positive attitude and try to enjoy each day. I have much to be thankful for. Instead of dwelling on things I can no longer do, I try to focus my time and energy on things I can still do.
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ALS Association
Suzanne Schrag, Senior Director of Care Services and ALS Clinic Liaison
Each member of the team at an ALS multidisciplinary clinic plays an important role in delivering critical care for people living with ALS and their families. Association-wide liaisons work closely with ALS clinics nationwide, ensuring each patient’s unique needs and wishes are being addressed throughout their journey living with ALS. We recently spoke with Suzanne Schrag, senior director of care services for The ALS Association Rocky Mountain Chapter, and clinic liaison to ALS multidisciplinary clinics across Colorado and Utah.
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ALS Association
Wil Armstrong: Riding Against the Wind to Fight ALS
Since high school, twenty-two-year-old Wil Armstrong dreamed of cycling across the country. After witnessing the impact of ALS on Rodney Lapp, his former mentor and high school basketball coach, Wil found his purpose to make this dream a reality.
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ALS Association
AAN Accepting Public Comments on Updated ALS Quality Measurement Set
The American Academy of Neurology ALS quality measures provide guidance and recommendations to health care providers, to ensure the most current information is available to provide the highest standard of care for individuals living with ALS. AAN has published draft updates to the ALS Quality Measurement Set and is now accepting public comments to help inform the final updates.
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ALS Association
Meet Dr. John Novak, Neurologist and ALS Clinic Medical Director
While there are many moving parts within an ALS multidisciplinary clinic, each team member plays an important role in delivering critical care for people living with ALS and their families. The leader of the team is the medical director, providing the professional guidance and support necessary to meet the unique needs of each patient throughout their journey living with ALS.
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ALS Association
Extending Survival for People Living with ALS
The multidisciplinary care model brings together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline they need during a single visit. The ALS Association collaborates with experienced ALS clinicians across the country to help ensure people living with ALS have access to this type of specialized care.
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ALS Association
ICYMI: The ALS Association’s Top Ten Blogs of 2021
From the latest updates on ALS research and advocacy to information about caring for people living with ALS and stories from around the country, the Association’s blog covered it all. Here is a quick look at the top 10 features our readers enjoyed most.
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ALS Association
Doing Whatever it Takes to Deliver Hope and Impact
The work detailed in this report covers the entirety of our mission to create a world without ALS, from expanding the research pipeline, to working to bring the best care possible to people living with ALS and their caregivers to fighting for increased federal funding for ALS research and public policies that improve the quality of life for people living with ALS.
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ALS Association
My Dad and Our Life with ALS
My parents had been married less than two years when my dad was diagnosed. Of course, making a decision regarding whether or not to start a family was difficult at the time, but due to their faith and positive outlook, they chose to do so. Had they not shared the same optimism, my older brother John would not be here, and I would not be writing this today. To say that I am thankful for their decision is an understatement. My dad has had a long battle with ALS and is still fighting after 26 years.
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ALS Association
Researcher Spotlight: Yuka Koike, Ph.D.
We talked with Dr. Yuka Koike, postdoctoral fellow working under her mentor, Dr. Leonard Petrucelli in the Petrucelli lab at Mayo Clinic Jacksonville, to learn more about her and her ALS research focused on revealing how TDP-43 mediated RNA dysfunction contributes to ALS/FTD disease.
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Greater Chicago Chapter / ALS Association
ALS Family of Faith: One Man’s Spiritual Journey Living With ALS
Steve realized he needed to turn to his faith to help him live with ALS. Steve assembled a team and got to work developing ALS Family of Faith, a new ministry designed to meet the needs of those looking for prayer and spiritual counseling during their journey with ALS.
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ALS Association
PRO-ACT Database Wins Healey Center International Prize for Innovation in ALS
The Pooled Resource Open-Access ALS Clinical Trials (PRO-ACT) database recently received the Healey Center International Prize for Innovation in ALS, a $50,000 prize. The database is the largest collection of ALS clinical trial data and includes de-identified records of 11,000 patients from 23 clinical trials.
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ALS Association
ACT for ALS Passes After Heroic Efforts of ALS Advocates
Thanks to the hard work of ALS advocates, Congress has passed the Accelerating Access to Critical Therapies (ACT) for ALS Act after a unanimous vote in the Senate. The bill previously passed in the House 423-2. The bill is expected to be signed into law by President Biden.
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ALS Association
ALS Focus Results Show Benefits to Telehealth Access
People with ALS and their caregivers who participated in a recent ALS Focus survey said that telehealth appointments improved their quality of life by saving them time and money, and that the appointments are just as good as in-person health care visits.
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