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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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Florida Chapter
Elizabeth Bradley: From Grief to Grad Student
Elizabeth Bradley lost her husband Woody to ALS, and has used his passing as inspiration to pursue a Master of Science in Psychology.
To complete her research project, she needs survey responses soon!
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Wisconsin Chapter
Demystifying ALS Research with Dr. Allison Ebert, PhD
Leadership Team Member & Professor at the Medical College of Wisconsin, Dr. Ebert breaks down the challenges of finding effective therapies for ALS and how you can support the important work happening in her lab.
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Wisconsin Chapter
Profile of Perseverance: Mark Kandel
Mark Kandel began experiencing indicator symptoms of ALS in 2011; falling, difficulty walking, loss of balance, spasticity in his right leg, and foot drop. In October of 2014, at age 59, he received his ALS Diagnosis at Mayo Clinic in Rochester, MN.
Mark is now "66 years young" and attends the Froedtert Clinic working with Dr. Dominic Fee. Despite the abilities he’s lost, Mark’s focus is on the present and what he is still able to do to "keep fighting."
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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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Massachusetts Chapter
Petrovsky Poetry: January Feature
Debbie Petrovsky, a woman with ALS residing in Massachusetts, pens poetry to articulate her experience living with the disease. Her unique expression is unique to her experience yet offers insight for those looking to learn more about the challenges of ALS.
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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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