06/24/2025
💜 What an incredible weekend with our ALSP Community!
On Friday, our EL-PFDD shed light on the struggles of living with ALSP and community preferences for future treatments. It was a powerful and emotional day filled with amazing insights for our Voice of the Patient report. A huge thank you to everyone who participated in person and virtually.
On Saturday, the speakers for our 2025 ALSP Community Conference shared amazing information on the latest research and scientific updates giving us so much hope for the future.
On Saturday night, we ended the weekend with a 5 year anniversary celebration concert where our patients and care givers got to enjoy a night of music and we were able to raise awareness about ALSP to the hundreds of attendees who were hearing about the disease for the first time!
We would like to thank everyone who made this weekend possible:
✈️ Our patients, care givers and family members who traveled to Philadelphia and came together as a community to let their voices be heard.
🧬 Our conference presenters for sharing their knowledge and research: Dr. Jennifer Orthmann-Murphy, Aaron Baldwin, Gretchen Hover & Janet Chien, Dr. Yedda Li, Dr. Beth Rush, Dr. Roberta La Piana, Dr. Stephen Hampton and Dr. Jeffrey Gelfand.
🩷 Our founder Heidi Edwards and Executive Director Erin Sullivan for making this event possible.
🎤 Our EL-PFDD moderators: Dr. Laura Naydovich and Erin Sullivan.
🔬 Our sponsors: Vigil Neuroscience, Savanna Biotherapeutics, and Prevail Therapeutics, a wholly owned subsidiary of Eli Lilly.
🎸 Mr. Greengenes, DJ Double E, Bret & Megan Hamilton and the Eagles Superbowl Trophy for making Saturday night unforgettable.
🎁 Our raffle donors: Live!, The Philadelphia Phillies, Mudhen Brewing, Bowfish Kids, Cape May Whale Watch & Research Center, Bret Hamilton, Greg Seiple and Heidi Edwards.
⭐️ Our SHF volunteers for their help at the concert.
If you have any photos or videos from the weekend that you would like to share with us, please email them to marketing@sistershopefoundation.org!
