Have a question you need advice on? Want to meet other patients and care partners? Join us for our virtual March Support Group on Friday 3/28 at 8pm EST/7pm CST. Our support groups are an open discussion and forum for anything you want to talk about. We're looking forward to seeing you there!

Click here to join.

Have a question you need advice on? Want to meet other patients and care partners? Join us for our virtual April Support Group on Friday 4/25 at 8pm EST/7pm CST. Our support groups are an open discussion and forum for anything you want to talk about. We're looking forward to seeing you there!

Click here to join.

Have a question you need advice on? Want to meet other patients and care partners? Join us for our virtual May Support Group on Friday 5/23 at 8pm EST/7pm CST. Our support groups are an open discussion and forum for anything you want to talk about. We're looking forward to seeing you there!

Click here to join.

The Sisters' Hope Foundation externally-led patient focused drug development (EL-PFDD) session will be held on Friday June 20th, 2025. Information and insights gained during this meeting will be summarized in the "Voice of the Patient" report that will be published for public use. Register to participate in person or virtually through Zoom.

Register here!

Agenda
1:00 pm - Welcome: Sisters’ Hope Foundation
1:05 pm - Welcome: FDA Representative
1:10 pm - ALSP Clinical Overview: Clinician
1:20 pm - Introduction and Meeting Overview
1:25 pm - Remote Demographic Polling
Session 1: Health and Daily Effects of Living with ALSP
1:30 pm - Panelist Testimonials
2:00 pm - Moderated Audience Discussion and Remote Polling
3:00 pm - BREAK
Session 2: Current Approaches and Future Preferences to Treating ALSP
3:15 pm Panelist Testimonials
3:45 pm - Moderated Audience Discussion and Remote Polling
4:45 pm - Meeting Summary
4:55 pm - Next Steps and Closing

Date: Friday, June 20th, 2025
Time: 1pm-5pm
Venue: Live! Casino & Hotel, 900 Packer Avenue, Philadelphia, PA

Please contact Erin Sullivan at erin@sistershopefoundation.org with any questions.

Our 2025 ALSP Community Conference will be held on June 20th & 21st in Philadelphia, PA! Your sponsorship and support allows us to bring the latest research, news and developments to our patients, care partners, medical professionals and industry partners as we collectively work towards a cure for ALSP!

Friday 6/20: FDA Patient Focused Drug Development (PFDD) session for patients and care partners.

Register for EL-PFDD

Saturday 6/21: ALSP Community Conference!

*Ticket includes lunch & snacks. Reserve tickets here.

Community Conference Sponsorship Opportunities

Saturday Night 6/21: Enjoy a carefree night with friends and family at our Rock Out ALSP Benefit Concert with Philly's favorite cover band, Mr. Greengenes!

Concert Tickets & Sponsorships

Venue: Live! Casino & Hotel, 900 Packer Avenue, Philadelphia, PA

The first annual Birdies Fore Hope Golf Tournament benefiting Sisters’ Hope Foundation. More information coming soon!

More details coming soon!