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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
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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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.
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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.
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Florida Chapter
Stomp Out ALS - A Derby Day Event
Stomp Out ALS is a third-party fundraiser hosted by Brandi Hyatt in memory of her father Jack who passed away in 2017. The event is centered around the Kentucky Derby - getting dressed up, wearing big hats, eating delicious Southern-themed food and baked goods, picking horses and other Derby-related activities.
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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.
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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.
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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.
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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.
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ALS Association
Jeff Elbert: I Volunteer in Honor of My Dad
We recently spoke with Jeff Elbert, volunteer and board member for The ALS Association Florida Chapter, to learn more about his personal connection to ALS and his fight to bring more critical care and support to people living with ALS and their families.
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Greater Philadelphia Chapter / ALS Association
Felicia Cleary and Hayley Noel: Volunteering to Help Create a World Without ALS
For more than ten years, Donna has worked with The ALS Association Greater Philadelphia Chapter as Director of Development. She has also been a constant advocate, supporting the chapter’s ALS families through fundraising initiatives, and a caring, compassionate ally throughout their ALS journey. Hayley and Felicia joined Donna in her mission to help people impacted by ALS when they were young girls.
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ALS Association
Lindsay Litterini: Why I am an ALS Volunteer
We recently caught up with Lindsay Litterini, volunteer and board member for The ALS Association Western Pennsylvania Chapter, to learn more about her personal connection to ALS and her passion to join the fight against the disease.
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ALS Association
Jackie Heltz: My Journey as an ALS Volunteer
Volunteering for The ALS Association is the longest I’ve ever done anything in my life. There’s always more to be done, but creating an environment, virtual or in-person, where people impacted by ALS feel welcome, empowered, and heard is so important.
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Wisconsin Chapter
My Dad the Super Doc: Joe Kelley
Super Doc Joe Kelley was a veterinarian near Madison, WI. He left a legacy of love, laughs, and generosity.
Brenna Kelley, daughter of Super Doc Joe Kelley, shares with us Dr. Joe's story and the children's book that was written about him.
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ALS Association
Mindful Mobility
Heidi Tarr Henson, diagnosed with ALS last spring, shares thoughts about her personal journey living with the disease, how she’s managing her personal changes in mobility and how she strives to just live in the moment.
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ALS Association
Brett and Jeannine Schoenecker: True ALS Heroes
Before Brett’s ALS diagnosis, he was an electrician, an outdoorsman and a musician. His hands were his livelihood, creative outlet and unfortunately, the first part of his body to be affected by the disease.
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Florida Chapter
Concrete Cowboy Rides for ALS
Gene Nifenecker rode Cash the bull in the Cracker Day Rodeo to raise money for ALS and make his wife, who is living with the disease, smile.
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Greater Philadelphia Chapter / ALS Association
Peter & Lura Sawyer: True ALS Heroes
Peter Sawyer of Mechanicsburg, PA is a military veteran and has been living with ALS for five years. He and his wife and caregiver, Lura, are tireless advocates for The ALS Association’s mission and exemplify true ALS heroes.
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