21st Annual Research Update and Awards Luncheon

Thank you to everyone who joined us at the 21st Annual Research Update and Awards Luncheon held on Sunday, May 4, 2025 at the Inn at Villanova. This event is an opportunity for everyone to learn more about the current state of ALS research and for us to thank our wonderful supporters from throughout the year. We are grateful for the amazing level of support our community has shown our organization. Thank you!

Click on the video to watch the presentation on YOUTUBE.

Dr. Richard Bedlack, Associate Professor of Medicine/Neurology at Duke, Director of the Duke ALS Clinic, and Chief of Neurology at the Durham Veterans Affairs Medical Center, gave an excellent and thought provoking presentation on “Signals from The Outer Limits: What I've Learned from Slow ALS Progressors and Reversals and How I Think I Can Make This Happen More Often.”

Dr. Terry Heiman-Patterson provided an update on the work of the ALS Hope Foundation, showcasing the three pillars of Care, Education and Research that the ALS Hope Foundation embodies. You can read the program book here.

We then took the opportunity to say Thank You to people or organizations that have supported the ALS Hope Foundation, especially over the past year.

Our first award, the Promise of Hope, goes to young people who are already making a difference in the ALS community despite their young age. Quinn Jennings raised money in memory of her grandfather and Sohana Damani has spent countless hours volunteering in the office, on social media, and at events.

The Spirit of Hope Award recognizes the work of our outstanding volunteers. Musician Lenny Blazick held fundraisers at The Royal in Glenside to support our Hope Bridges Program in memory of Gino Carosella. Paul Schiller and Larissa Ding give back with tremendous hours of volunteer work. We are grateful for all of them!

They all embody the saying, “You must be the change you wish to see in the world.” ~Mahatma Ghandi

Our Community of Hope awardees included our longtime lawyer, Frank Noyes, who retired this year, and a newcomer, Dr. Lijo Illipparambil, a new pulmonologist at Temple Hospital. Hopewell Pharmacy and PromptCare were also thanked for their support of our people living with ALS.

“Only a life lived for others is a life worthwhile.” ~Albert Einstein

Next came our Courageous Heart awardees. The Courageous Heart Award goes to those who take on a proactive role in the fight against ALS, supporting others with ALS and the ALS Hope Foundation, while courageously battling ALS themselves.

Our 2025 Courageous Hearts are Mikail Christakis, Scott Goldsberry, Greg Heydet, Wendy Hendrickson, Todd Kelly, Pat Kenney, Dr. Stacy Lewin Farber, Bob Spurrier and Marcos Trujillo.

"Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, 'I will try again tomorrow.'" ~Mary Anne Radmacher

Finally, we presented our Sunrise Award to Doug Hill and Mike O’Brien. The Sunrise Award goes to an individual or organization having demonstrated the highest level of commitment to supporting the ALS Hope Foundation through financial support and dedication to its mission. Doug and mike, and their families and friends, have demonstrated just that. We are not only thankful for them, but also inspired by them. Thank you to everyone who attended!