ARCHIVED NEWSLETTERS

#rarediseaseday #alsawareness #raredoesnotmeanalone #raredoesnotmeaninvisible

On behalf of Ashley Corbin of ALS Hope North and the entire ALSHF team we’d like to share a few words The ALS community has faced some major losses recently, including one incredibly fierce warrior, Leah Stavenhagen. As a young woman who loved exploring life and traveling around the world, she sought expert opinions from all over when she began noticing physical changes taking place. She received the definitive ALS diagnosis in 2019 at the age of 27. As she was learning about the changes she was experiencing and looked for resources to help navigate this next chapter in life, she realized there was a lack of information and awareness for people who are younger and receive an ALS diagnosis. Leah was proactive in all areas of her life, and with the world shutting down from COVID, she used the time to network with other women her age, to bring them together to share ideas, support and resources for living with ALS. From this, she created Her ALS Story: a community of women from around the world who were diagnosed before the age of 35. What started as a small core group, the word spread and the need to make this the most unique and supportive ALS community for women became Leah’s passion. Over the last 4 years, Her ALS Story has held an annual retreat, bringing together these fierce women along with their caregivers for a week of unapologetic joy, pure lessons in life shared, and most importantly a space for unconditional love and acceptance. Each of the more than 100 members of Her ALS Story has benefited from knowing Leah personally and have taken great comfort in this special sisterhood she created. She never let ALS stop her from living her life to the fullest and continued traveling the world with her family, close friends, and always had her loving husband Hugo by her side. Anyone who had the chance to meet Leah, including the team at ALS Hope Foundation got to witness her zest for life. While it’s not easy to process what the world will be like without her being physically present, her legacy will continue to live on through her vision with Her ALS Story and all of the partnerships she created in the ALS community.

Tickets are on sale now for the 8th Annual Gala of Hope! Join us for an evening filled with hope and community 💙✨ This year, we will have ALS Warrior, Justin Ramirez as our guest speaker and a special performance by Stephen Kellogg! Also be sure to join our VIP hour exclusively for Patients and their Caregivers from 5-6PM! To learn more about the event and purchase tickets, please visit the link in our bio or visit charity.pledgeit.org/gala-of-hope If you have any questions, please reach out to marinne@alshopefoundation.org

We had some new visitors to the ALS Hope Office! Brian and Steve of Hahn Welding Supply Allentown stopped by to make a donation in honor of Brian’s beautiful mother. We are so lucky to have great community partners like Brian and Steve supporting our mission! If you’d like to learn more about Haun Welding Supply Speciality Gases visit haunweldingsupply.com

The ALS Hope Foundation and Hope Loves Company are teaming up for a one of a kind event! The community gathering, lecture, and educational conversation will be hosted by Jodi O’Donnell Ames and Dr. Terry Heiman-Patterson. Together, they’ll share insights from their 25 years working to fight ALS and discuss the book “Someone I Love Has ALS: A Caregiver’s Guide.” This free event is welcome to those living with ALS, their caregivers, families, as well as professionals and anyone seeking deeper understanding, shared learning, and connection. 📅 Saturday, March 21, 2026 ⏰ 4:00–6:00 PM EST 📍 Global Neurosciences Institute, Pennington, NJ 💻 Virtual attendance available (Zoom link shared after registration) 🎟 Free admission See the link in our bio to RSVP/Register or visit alshf.org/events

Our very own Dr. Terry Heiman-Patterson and Dr. Lyle Ostrow are teaming up with Dr. Richard Bedlack for a new monthly webinar series, Hope Untangled! Join the experts for a thoughtful discussion on how to differentiate fact vs speculation in ALS science and treatment! ✍️ See the link in our bio to RSVP or visit alshf.org/events. The series will be presented by Everything ALS, ALSHF, and ALS Untangled and held on Feb. 18th, Mar. 18th, and May 13th at 4pm PT / 7pm ET

Huge shout-out to this absolute do-it-all personal assistant 🙌 Do-It-All Donna stopped by our storage unit last week. They went above and beyond, helping one of our families safely move equipment out of their home and into our storage unit for donation. Donna says, “Helping families through moments like these is the reason I started this business.” Thank you, Donna! If you’re looking for someone in the Chester County area who can handle it all (and then some), this is your person! Contact Donna at: @doitalldonna14 doitalldonna14@gmail.com or visit doitalldonna.com for more information!

Our BCI was excited to host the Speech Language Pathology Team from Gwynedd Mercy University today to showcase our Brain Computer Interface technology. We exchanged knowledge about neuroscience research and augmentative and alternative communication tools. We look forward to collaborating more in the future. @gmercyuslp