Blog

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.
Blog
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. 
Blog
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.
Blog
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.
Blog
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.
Blog
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.
Blog
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.
Blog
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.
Blog
ALS Association
Celebrating Lou Gehrig Day 2022
Today, in Major League ballparks across the country, fans will take part in the celebration of the second annual Lou Gehrig Day, an event to help spread awareness and raise funds for people living with ALS and their families. And no baseball fan is more excited than Larry Falivena.
Blog
ALS Association
Scott Kauffman on Doing Whatever It Takes to Create a World Without ALS
Earlier this year Scott Kauffman, a business executive and long-time leader in the fight against ALS, began his tenure as chairman of The ALS Association Board of Trustees. We recently caught up with Scott on Connecting ALS, where he talked about his connection to the disease, raising awareness and his vision for creating a world without ALS.
Blog
ALS Association
The Impact of Advocacy
In order to make ALS a livable disease and ultimately find a cure, it’s going to take people living with ALS, their caregivers, family members and loved ones across the country coming together to pursue public policies that help discover new treatments, empower people living with ALS to live life on their own terms and help reduce harms associated with the disease. In the past 12 months, ALS advocates have seen a number of public policy wins.
Blog
ALS Association
A Pivotal Time in ALS Research
The work to make ALS a livable disease and continuing to search for a cure rests in no small part on a robust drug discovery pipeline. That is why increasing interest in ALS research is critical. 
Blog
ALS Association
True Awareness
Diagnosed with ALS last spring, Heidi Tarr Henson, Ed.D., shares thoughts about her personal journey living with the disease and what real awareness of ALS means to her.
Blog
ALS Association
Ken Paves: My Mother Was My Everything
In celebration of mothers everywhere today, we are honored to share the story of celebrity hairdresser and beauty expert, Ken Paves, and his amazing story about life, love and caring for his beautiful mother, Helen, who recently lost her battle with ALS.
Blog
ALS Association
My Personal ALS Journey
I have been very fortunate and extremely unlucky in my life. I have bulbar-onset ALS. Of course, living with this “new normal” is challenging. But my previous experience with grief has informed my attitude now as well, and I try to live each day as best I can, in the most positive way possible.
Blog
ALS Association
ALS Awareness Month Starts Today: How You Can Help Join the Fight
May is ALS Awareness Month, an opportunity for the ALS community to work together to help educate people about this devastating disease and shine a spotlight on the impact ALS has on the families it touches. To kick off the month of May, we’re highlighting eight easy ways you can help raise awareness this month and beyond.
Blog
ALS Association
Mike Howe: ALS Volunteer and Hometown Hero
Mike will never forget receiving a phone call telling him that his best friend, Matt, had been diagnosed with ALS. The first event Mike attended for The ALS Association was a golf event in Janesville with Matt. That one event has now become years of walks and third-party events supporting The ALS Association Wisconsin Chapter.
Blog