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ALS Association
Advancing the Science of Preventing ALS
We discussed the incredible strides being made in the science of preventing ALS with Dr. Stephen Goutman, Director of the Pranger ALS Clinic and Associate Professor of Neurology at the University of Michigan.
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ALS Association
Diana Kirk: Why She Fights for the ALS Community
After my dad was diagnosed, there was no hesitation that our family was going to fight alongside him. So that meant it was time to volunteer with The ALS Association. We all knew right then and there that our volunteer work wasn’t going to save our father, but it was going to help others not feel the devastation we were feeling at the time of his diagnosis.
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ALS Association
Caring for Our Youthful ALS Caregivers
We spoke with Dr. Melinda Kavanaugh, clinical social worker and associate professor at the University of Wisconsin-Milwaukee, to understand more about young caregivers and the potential harms caused by the lack of quality of sleep they receive and what can we do about it.
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ALS Association
Dr. Jack Finlay’s Algorithm for Living with ALS
Jack Finlay was just 22 years old when he was diagnosed with ALS in 2010. Working toward his degree at the University of Montana, he vowed to not let the disease get in the way of achieving his dreams and living his best life.
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ALS Association
Working Together to Make ALS Livable Until We Find a Cure
We are pleased to share our 2022 Mid-Year Report, detailing the work and achievements that have shaped the first half of this year, touching on all aspects of our mission: research, care services and advocacy.
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ALS Association
Jake Obid: Fighting ALS 26 Miles at a Time
Jake met Bill Wechsler during his freshman year in high school in Holliston, MA. Challenged with academic and mental health issues at the time, Jake was referred to Bill who was the school social worker for counseling and support. By the spring of his junior year, Jake had made so much progress he no longer needed the formal counseling he had become accustomed to, but he still frequently visited Bill to spend time talking with him. It was around that same time that Bill was diagnosed with ALS.
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ALS Association
Working Together to Provide Access to ALS Care
Multidisciplinary care has been proven to extend life, helping people living with ALS maintain independence longer and enjoy improved quality of life when provided with options for symptom management, assistive technology, adaptive equipment, education, care services and emotional support.
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ALS Association
Working Together to Address Mobility Challenges While Living with ALS
Decreased mobility is a challenge faced by every person living with ALS, and helping people improve their mobility is a key to making the disease livable. It’s also a key to empowering people to live their lives as they want while reducing or preventing physical, emotional and financial burdens, and to enjoy the leisure activities that enrich their lives.
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ALS Association
Right to Make Individual Healthcare Decisions at Risk in Post-Roe v. Wade World
The recent ruling by the Supreme Court to overturn Roe v. Wade is a wakeup call for all of us who care about the rights of people being able to make decisions about their own healthcare. No matter your political perspective or leanings, any erosion of the rights for individuals and their loved ones to set the course for their own treatment in consultation with their medical professionals is of great concern.
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ALS Association
Casey Saunders, Determined to “Drag Down ALS”
While thinking about what I could do that would be a special and fun fundraiser, I noticed a famous drag queen asking for donations to a nonprofit on her social media and I thought “How do I get her to do that for The ALS Association?”
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ALS Association
10 Ways to Help Prepare for an Emergency While Living With ALS
Emergencies and disasters can strike quickly and without warning. For the thousands of Americans living with ALS, emergencies such as fires, floods and acts of nature present an even greater challenge. Here are some ideas and things to think about to help keep you and your family safe in case of an emergency or a natural disaster.
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ALS Association
Bringing Our Fight to Capitol Hill
On June 22, we led delegations of advocates in a full day of virtual congressional meetings to push Congress to support and pass critical legislation that will help the ALS community, including funding for ALS research and making expanded access to telehealth permanent -- 320 ALS Association staff and ALS advocates from 46 states shared their personal stories and experience living with ALS with more than 300 members of Congress and their staff. 
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ALS Association
Celebrating Global ALS Awareness Day 2022
June 21 is a solstice, a turning point, if you will, and each year the ALS/MND community around the world celebrates Global ALS/MND Awareness Day to express their hope that this day will be yet another turning point in the search for causes, treatments and ultimately a cure of ALS/MND.
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ALS Association
Mark Johnson: Doing Whatever It Takes to Fight ALS
Since Mark’s diagnosis in 2000, he has been committed to the fight against ALS on many levels. Over the past 21 years, he has advocated locally at the state level and nationally on Capitol Hill. He’s volunteered at innumerous events with The ALS Association Mid-America Chapter and served on the Chapter’s board and Services Committee. All who know him say his ALS diagnosis does not define him, instead it motivates him to do more and to give hope to others.
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ALS Association
Meet Ahmad Al Khleifat, ALS Researcher and 2021 Milton Safenowitz Postdoctoral Fellow
We talked with Dr. Ahmad Al Khleifat, recent winner of the distinguished ENCALS Young Investigator Award and postdoctoral fellow from King’s College London, to learn more about his research focused on disease gene identification through next generation sequencing, coupled with advanced data analysis to deliver diagnostic tools for complex disease genetics.
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ALS Association
Why Do YOU Advocate for the ALS Community?
It’s going to take all of us working together to make ALS a livable disease and ultimately find a cure. And it will take people like YOU. Whether you have a personal connection to ALS or just want to help make a difference for families impacted by the disease, becoming an advocate is easy.
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ALS Association
Advocacy in Action
Our public policy priorities focus on the three main pillars of making ALS livable: Find New Treatments and Cures, Optimize Current Treatments and Care, and Prevent or Delay the Harms of ALS.
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ALS Association
Eric Sedransk: Why I Joined the Fight Against ALS
I’m hopeful because when my father left us, he left a piece of himself with me, and I’ll do everything I can to raise as much money and awareness as possible so that those three letters - A L S - are no longer considered a death sentence.
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