ALS Hope Foundation

10/09/2026

For , PT and OT are sharing an informational video on rolling walkers. Thank you!

10/06/2026

Tune in tomorrow at 3:00 PM (EST) for a deeply informative discussion with Ron Lieber, a New York Times columnist, and Carolyn McClanahan, M.D. and Certified Financial Planner, about the true cost of ALS, hosted by the folks ALS.Community!

RSVP Here:
https://app.als.community/events/the-true-cost-of-als-106007161

10/02/2026

The entire ALS community is cherishing the life of an incredible light, Brooke Eby.

Brooke reshaped the way the world saw ALS. By sharing her life with remarkable honesty, vulnerability, and a signature sense of humor, she brought millions of people into her journey and reminded them that there is a whole person behind a diagnosis.

She challenged people to think differently. She inspired them to care more deeply. And through some of the hardest moments imaginable, she still found a way to make people laugh.

Our hearts are with Brooke’s family, friends, loved ones, and the entire ALStogether community. Brooke, thank you for sharing your light, your love, and for keeping hope on the horizon for so many. We will continue to fight in your honor—and for everyone ALS has taken from us far too soon. Your legacy will continue.

09/29/2026

MAJOR WIN FOR THE ALS COMMUNITY: ACT FOR ALS PASSES CONGRESS!

The Senate just passed the ACT for ALS Reauthorization Act, sending this critical legislation to the President’s desk.

This milestone is the result of the advocacy and unwavering determination from people living with ALS, their families, caregivers, and advocates across the country.
Today, we celebrate this important step forward and thank the ALS community and members of Congress for coming together to advance legislation that can make a meaningful difference for people living with ALS.

Now on to the President’s desk!

09/27/2026

Another powerful day at the End The Legacy Genetic ALS & FTD Community Summit, hosted by our friends at the ALS Network. We are honored to continue partnering with and supporting Genetic ALS & FTD: End the Legacy and its critical mission.

Some of the very best organizations in the ALS and FTD communities came together to share their strengths, knowledge, and experiences. This is what meaningful collaboration looks like and it is making our community stronger. It truly takes all of us.

The Summit has created an incredible space for education, connection, and hope for people living with ALS or FTD, genetic carriers, caregivers, clinicians, researchers, and advocates. More importantly, it is helping build a community grounded in mutual care, respect, advocacy, and a shared commitment to one another.

The passion, compassion, and genuine connection we are seeing here is truly inspiring.

Together, we are stronger. Together, we keep moving forward.

09/25/2026

The ALS Hope Foundation is honored to work with our friends at ALS Network to support the Genetic ALS & FTD: End the Legacy 3rd annual North American Community Summit. It’s truly an inspiring conference, and gives us the opportunity to hear the voices and the priorities of people affected by Familial ALS and FTD. It’s the collaboration in this community that opens the door to conversations about risk, testing, family, research, and the future. Dr. Lyle Ostrow, Dr. Terry Heiman-Patterson, Dr. Cassandra Haddad (Temple Neurology) and Jamey Piggott were all speakers or panel members throughout the day!

09/24/2026

Support the OB Army and ALS Research by joining Designer Bag Bingo! In addition to 10 designer bags, there will be several raffle baskets and a 50/50 raffle during the event!

Designer Bag Bingo Details:
📅 Saturday, October 10, 2026
📍 Garrettford-Drexel Hill Fire Company, Drexel Hill, PA 19026
🚪 Doors open at 6:00 PM
🎟️ Bingo begins at 6:30 PM
🍷 BYOB
🍕 Bring your own food/snacks

Visit the link to purchase tickets: https://www.facebook.com/events/s/duck-als-designer-bag-bingo/1012937608138697/?mibextid=wwXIfr&rdid=pWIJIFdHw9nrzUG3&share_url=https%3A%2F%2Fwww.facebook.com%2Fshare%2F1Er9GVAsgn%2F%3Fmibextid%3DwwXIfr #

09/23/2026

Encouraging news for the FUS-ALS community. Otsuka and Ionis Pharmaceuticals have announced positive topline results from the Phase 3 FUSION trial of ulefnersen, an investigational RNA-targeted medicine for FUS-ALS, a rare, often rapidly progressive genetic form of ALS.

The study met its primary endpoint, showing a statistically significant improvement over placebo on a combined measure of function and survival. Secondary endpoints were also supportive, and the treatment was generally well tolerated. FUSION is the first placebo-controlled trial targeting the underlying genetic cause of FUS-ALS.

Ulefnersen is still investigational and not yet approved. The companies plan to discuss the results with the FDA and other health authorities. Thank you to the participants, families, investigators, and advocates who made this possible. 💙 Learn more at otsuka.com/news

09/22/2026

Our 19th Annual Hope Walks for ALS Family Fun Day was amazing! Despite the cloudy skies, we loved spending time with our community and enjoying great food, raffle prizes, puppies, and more!
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Thank you so much to our Walk Chair, KC Lubinewski, and all of our sponsors, friends, family, and volunteers that joined us to make the day so special. With your support, we exceeded our fundraising goal of $100,000! We are incredibly grateful for the generosity of our community. We couldn’t do the work we do without your help.
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Thank you so much for helping us keep Hope on the Horizon!

09/17/2026

Sharing this discussion from our friends at the ALS Network!

Join us tomorrow for our next ASK ME educational webinar, "Traveling With ALS," on Thursday, September 17, at 5:00 PM PT/2:00 PM HST.

Hosted by Steve Goclowski, LCSW, vice president of Care Services at ALS Network, this informative presentation features Michele Campanelli-Erwin, president and founder of All Wheels Up, and David Buseck, person living with ALS and ALS Network board member.

RSVP today at https://ow.ly/acLo50ZOsa2