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.

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.

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.

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.

Dr. Bridget Stegman was diagnosed with bulbar onset ALS in February 2022. She and her family have been embraced by their community, who have showered them with love and hope as they rally together to spread awareness of this disease.

Long-time natives of Colorado, Ellen and Lorenzo enjoyed an active busy lifestyle. Until ALS entered the picture, their plans for living a long and full life were all they dreamt about.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Carianne “Cari” Meystrik is a true hero to her family, friends and the entire staff at The ALS Association Tennessee Chapter. Cari and her husband Chris had only been married for 6 ½ years when she was diagnosed with ALS in 1998 while pregnant with her fourth child. The couple thought their dreams of growing old together and raising a family were over. Instead, despite the various obstacles brought on by ALS, the Meystrik family has had incredible adventures and made precious memories that carry them through the tough times.

In 2016, Troy Fields had everything going for him. A beautiful and growing family. A highly successful and satisfying career that allowed him to travel internationally. But he also started to notice signs that something wasn’t quite right. After treatment for cancer and a battery of other tests, his ALS diagnosis was eventually confirmed. Instead of focusing on what he was going to lose, Troy opted to channel his energies to be an agent of change for the ALS community.

Heidi Tarr Henson, diagnosed with ALS last spring, shares thoughts about her personal journey living with the disease, what courage means to her and how she strives every day to embrace and live by this powerful virtue.