Sisters' Hope Foundation for Hereditary Diffuse Leukoencephalopathy

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Myerstown, PA
Sisters' Hope Foundation for Hereditary Diffuse Leukoencephalopathy

We are dedicated to amplifying patient voices, and one day meeting the first survivor of ALSP.

The mission of Sisters' Hope Foundation is to support and empower families impacted by HDLS/ALSP/CSF1R related leukodystrophy by:
*educating the public to increase awareness around this rare disease
*advocating for further research and funding to improve treatment options
*connecting patients and families with this diagnosis to build community and support
*providing financial assistance and resources to those in need

07/10/2025

💖 We’re thrilled to be part of the KelSea Apparel & Accessories Give & Get Sale! If you are local to Schuylkill County PA, check out KelSea for women's summer style sizes S-3X plus shoes, jewelry, handbags and more.
From July 9-26, donate $10 to Sisters' Hope Foundation — and you’ll get 50% off your purchase!
🛍️ You shop. We benefit.
Every dollar donated comes directly to us!
Support local fashion AND your favorite cause.

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!

06/23/2025

To our in person and virtual EL-PFDD participants:

Thank you for your interest and participation in the ALSP Externally-Led Patient Focused Drug Development Meeting (EL-PFDD). Your experience and insight are extremely valuable. As mentioned during the EL-PFDD, Sisters' Hope Foundation has a form available for the next 30 days to share any other insights that come to mind in the following days. All of the comments submitted in this way will also be included in the Voice of the Patient Report. You can access the form on the homepage of our website, www.sistershopefoundation.org or by clicking the link below.

https://zurl.co/0Kcfw

06/19/2025

The countdown is on! Two days until the ALSP community is together in Philadelphia!

We'll be reminiscing on all that has been accomplished and looking forward to the future of the latest breaking research and advancements as we work toward a cure for ALSP!

We hope you can join us this weekend for our EL-PFDD and 2025 Conference followed by a night of fundraising, rock n' roll at the Rock Out ALSP Benefit Concert!

Details about all events can be found under the "Events" tab of our website at https://zurl.co/V9dvz

06/18/2025

Have you heard?!

Now through June, 21st: An anonymous donor will be giving a 100% match on all donations made to Sisters' Hope Foundation up to $5,000!

Use this link to donate: https://zurl.co/1IoY0
(Viewing this on Instagram? Head over to our page for the link!)

Be sure to share with your friends & family to help us reach our goal!

06/17/2025

We're so excited for an amazing week with our EL-PFDD, 2025 ALSP Community Conference and 5 year anniversary celebration benefit concert with Mr. Greengenes!

06/15/2025

🎸🎶 The countdown is on!

6 days until Mr. Greengenes returns to Philly for the first time since 2015!
(Yes, the same Mr. Greengenes that rocked the Jersey Shore and Eagles home games in the 90’s & 00’s!)

Don’t miss this incredible night of fundraising, rock ’n roll, with Bret Hamilton of QVC & Y100 as MC and DJ Double E as we celebrate 5 years of Sisters’ Hope Foundation and our amazing ALSP community!

VIP Includes:
*Open Bar
*Appetizers
*Lounge Seating
*Special Guests 🦅🏈

Saturday June 21st, 2025
Live! Casino & Event Center
Doors 7:30pm, Show 8:30pm
All Ages (Under 21 with Parent/Guardian)

Tickets on sale NOW: https://www.zeffy.com/ticketing/mr-greengenes-concert-tickets

06/14/2025

Only one week until our ALSP EL-PFDD! We encourage all patients and care partners (both current and former) to participate virtually or in person in Philadelphia, PA. Now, more than ever, let your voices be heard! Participation is open to all family members as well!

Register Here: https://zurl.co/qeGuI

More information, including a list of discussion topics, can be found on our website: https://zurl.co/QLXqR

Sponsored by: Vigil Neuro

06/13/2025

Who's excited to celebrate 5 years of Sisters' Hope Foundation?! We'll be reminiscing on all that has been accomplished and looking forward to the future of the latest breaking research and advancements as we work toward a cure for ALSP!

We hope you can join us next weekend as we welcome our community to Philadelphia for our EL-PFDD and 2025 Conference followed by a night of fundraising, rock n' roll at the Rock Out ALSP Benefit Concert!

Details about all events can be found under the "Events" tab of our website at www.sistershopefoundation.org

06/12/2025

🧬 We have an incredible line up of speakers for our 2025 ALSP Community Conference and Dr Yedda Li was just added to talk about her latest gene editing research! This is going to be such an amazing day filled with hope for the future of ALSP.

There’s still time to register! Visit: https://www.zeffy.com/en-US/ticketing/2025-alsp-community-conference-tickets(Attendance is free for patients & care partners!)

Our 2025 ALSP Community Conference will be held on June 20th & 21st in Philadelphia, PA!

🔬 Friday 6/20: Exernally-Led Patient Focused Drug Development (EL-PFDD) session for patients and care partners. Registration information can be found under the Events tab of our website.

💜 Saturday: ALSP Community Conference!
Date: Saturday, June 20th, 2025
Time: 8am-4pm
Venue: Live! Casino & Hotel, Philadelphia, PA
*Ticket includes breakfast, lunch & snacks.

Sponsored by Vigil Neuro, Savanna Biotherapeutics and Prevail Therapeutics, a wholly owned subsidiary of Eli Lilly.

06/10/2025

The ALSP Aware free genetic testing program sponsored by Vigil Neuroscience ends today at 5pm EST. If you or a loved one are experiencing symptoms of ALSP or have a family history of the disease, register at the link below by 5pm EST on June 10th to take advantage of this program immediately before it closes.

Learn more here: https://zurl.co/7fmwb

We are deeply grateful to those who have participated so far and to Vigil Neuroscience for sponsoring this program. Sisters' Hope Foundation is currently pursuing a new partnership to offer no cost genetic testing for ALSP in the future.

06/09/2025

Now through June, 21st: An anonymous donor will be giving a 100% match on all donations made to Sisters' Hope Foundation up to $5,000!

Use this link to donate: https://www.zeffy.com/en-US/donation-form/shf-donation-match
(Viewing this on Instagram? Head over to our page for the link!)

Be sure to share with your friends & family to help us reach our goal!

Address

PO Box 12
Myerstown, PA
17067

Website

http://www.sistershopefoundation.org/

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