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.

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.

Just in time for Walk season Skippy's Team is the stuff of legend at the Milwaukee Walk to D'Feet ALS.
Over 100 team members strong, Robyn and the crew just don't quit. Year after year they gather, now going on 7 years since Kip's passing, and set records for raising hope and funds.

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.

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. 

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.

Jackie Heltz is a producer, filmmaker, and writer with a passion for issue-driven documentaries. She is also a dedicated volunteer in the fight against ALS.

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.

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.

When Peggy Jennerman's husband was diagnosed with ALS, it was not something either of them expected to hear.
As Dave's symptoms progressed Peggy reached out to the ALS Association Wisconsin Chapter and share her experience in her own words.

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.

Expanded Access, or “compassionate use” as it is often referred, allows patients with a terminal diagnosis early access to new therapeutics that show promise – even if the patient is not involved in the ongoing clinical trial – or if the medication has not yet been approved by the FDA.

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 spoke with Jo-Ann Clynch, volunteer and board member for The ALS Association Florida Chapter, to learn more about her personal connection to ALS and her passion to join the fight against the disease.

The Jane Calmes ALS Scholarship Fund is now accepting applications for the 2022-2023 school year! This fund will provide a $5,000 scholarship to students seeking a college degree or vocational certificate who have been financially burdened by an ALS diagnosis. The deadline to apply is May 18, 2022.

Occupational therapists are key members of the clinic team for individuals living with ALS. As ALS progresses, most people gradually lose their ability to use their hands and their arms as their muscles weaken. Occupational therapists help to provide expertise and creativity to help patients better manage daily activities for as long as possible.

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.

The ALS Association is accepting applications for The Jane Calmes ALS Scholarship Fund, which was established in 2019 to support post-high school education for students whose lives have been impacted by ALS. Scholarship recipients receive up to $5,000 per year to help cover the cost of education.