Sisters' Hope Foundation for Hereditary Diffuse Leukoencephalopathy

12/12/2025

California Institute of Regenerative Medicine has approved a grant to Savanna Biotherapeutics for $12,993,456 to continue their work in ALSP. This investment dedicated to preclinical development for CSF1R leukoencephalopathy (ALSP) is a significant milestone in their work towards a CURE.

https://www.cirm.ca.gov/about-cirm/newsroom/press-releases/cirm-approves-over-160m-to-support-preclinical-and-clinical-research-advances-education-opportunities-and-access-to-clinical-trials/

Access to clinical trials shouldn’t depend on where you live.

That’s why CIRM has approved $27 million to establish three Community Care Centers of Excellence (CCCEs) across California—in South Los Angeles, the Inland Empire and Desert Region, and in the Central Valley.

These centers will expand access to cutting-edge stem cell and gene therapy clinical trials for conditions such as cancer, Parkinson’s, and sickle cell disease, while also training the next generation of regenerative medicine professionals.

Together, the CCCEs mark a major step toward ensuring Californians have access to life-changing treatments close to home.

Read the full press release here: https://bit.ly/3Wwl4Rq

12/08/2025

Two research studies are available for those who have tested positive for the CSF1R gene mutation which causes ALSP.

The studies are run by (1) Dr. Jeffrey Gelfand at the University of California San Francisco and (2) Dr. Yedda Li at Massachusetts General Hospital in Boston.

BOTH Studies are open to symptomatic and asymptomatic patients, as well as those who have undergone a stem cell transplant using bone marrow, often referred to as BMT.

The research aims to test whether stem cells from blood can be genetically corrected using CRISPR (gene-editing technology) to repair the harmful CSF1R mutation, as a potential future treatment for ALSP. The institutions cannot share tissue samples so please consider taking the time to visit both.

Visits: The studies typically involve a clinic visit, skin cell biopsy, bloodwork, and potentially CSF collection.

Travel Expenses: If you need assistance with travel expenses, a generous donor has agreed to cover the financial expenses for travel, food and hotel.

Contact: To make an appointment, please contact the following individuals, who can also explain how travel costs will be covered and discuss the details of the study.

University of California San Francisco (UCSF) Research Study:
Dr. Jeffrey Gelfand (Jeffrey.Gelfand@ucsf.edu)
Miranda Sullivan - Research Coordinator (Miranda.Sullivan@ucsf.edu)

Massachusetts General Hospital (MGH) Research Study:
Dr. Yedda Li (YLi@mgh.harvard.edu)

Both institutions are conducting research on gene editing, and both locations need your help. Please consider participating in this much-needed research opportunity.

With your help, we are one step closer to finding a CURE.

More information can be found at: https://www.sistershopefoundation.org/academic-research

To be contacted when new opportunities are available, register at: https://www.aspirecures.com/

Research Opportunities! University of California San Francisco (UCSF):The UCSF Department of Neurology is recruiting for a biomarker and natural history study on a disease called ALSP.The University of California, San Francisco (UCSF) Department of Neurology is recruiting volunteers to participate i...

12/02/2025

✨ This Giving Tuesday, Give the Gift of HOPE. ✨

Today, you can make a difference for families living with ALSP, a rare neurodegenerative disease.
ALSP steals memories, mobility, independence — and time.

Many families spend years searching for answers, only to be told “There is no cure.”

Your donation helps change that.

With your support, Sisters’ Hope Foundation can:

✨ Connect families to specialists

✨ Expand research initiatives and genetic testing awareness

✨ Provide caregiver resources and emotional support through diagnosis and beyond

Every gift — no matter the amount — fuels research, amplifies patient voices, and gives families hope.

💜 Today, hope begins with you.

👉 Give now and change the future: https://www.zeffy.com/en-US/donation-form/giving-tuesday-318

12/02/2025

Giving Tuesday is Here! Together let's CURE ALSP.

Join the global movement of generosity and make an impact for ALSP and related brain diseases.

Your gift today supports those affected by ALSP, a rapidly progressive brain disease affecting memory and movement. Currently, there are no FDA approved treatments for ALSP and no clinical trial available to those diagnosed with the disease.

Every gift matters, and together, we can make a difference. Give today https://www.zeffy.com/en-US/donation-form/giving-tuesday-318

11/06/2025

To all the caregivers...this month and every month we honor you!

10/29/2025

Saturday was a beautiful day for our 1st Hope Unleashed pup walk.

Thank you to our sponsors, volunteers and participants for making our event a success!

Hope Unleashed: Pup Walk for Brain Disorders & ALSP

10/22/2025

Hope Unleashed: Pup Walk for Brain Disorders & ALSP

10/21/2025

Grab your fur baby and a group of friends and walk from anywhere. We love our virtual participants....just send us lots of pictures!

Register here: https://www.zeffy.com/en-US/ticketing/hope-unleashed-pup-walk-for-brain-disorders-and-alsp

10/20/2025

We have a few vendor spots available!
See everyone this Saturday!

Join Sisters’ Hope Foundation at the Lebanon Valley Craft Brewery on Saturday, October 25, 2025 for a fun day with your furry friend!

Bring your pup, sip a cold brew and walk for brain disorders and ALSP.

The 2 mile pup walk will begin at 10 AM ET, starting at the Lebanon Valley Craft Brewery. Your pup will enjoy special treats, including pup cups sponsored by DQ East, at our pup stops along the scenic route to Stoever’s Dam. Everyone will meet back at the Brew Pup to enjoy brews, brunch and barks all while supporting a great cause.

The event includes: A casual walk with or without a pup, pup treats, music, vendors, Sisters’ Hope swag, 50/50, raffles, dog photos, and a pup costume contest with prizes!

Register: https://www.zeffy.com/en-US/ticketing/hope-unleashed-pup-walk-for-brain-disorders-and-alsp

Thank you to our special guests from The Davis Dog Farm, who will be joining us with their furry friends who are looking for a fur-ever home!

09/11/2025

Just a friendly reminder to join us tonight at 7pm ET for our monthly patient and care partner support group meeting.

Join here: https://us02web.zoom.us/j/87157335793?pwd=7lgTbdftXJ4o0uOD3bOWprfETR4YKr.1

09/04/2025

All of our support group meetings are now scheduled and listed on our website.

Upcoming Events Sep 11 Monthly Support Group Meeting Thursday, September 11, 2025 7:00 PM 8:00 PM Google Calendar ICS Please join us for our monthly support group meeting for patients and care partners at:https://us02web.zoom.us/j/87157335793?pwd=7lgTbdftXJ4o0uOD3bOWprfETR4YKr.1 View Event → S...

09/03/2025

The Sisters' Hope Foundation and ALSP, Voice of the Patient report is almost complete.

In the meantime, if you were not able to attend the virtual or in-person EL-PFDD, please take some time to view the recording: https://youtu.be/XXYo4kuzYUw

Thank you to everyone who participated.

Sisters' Hope Foundation is a non-profit organization providing support, awareness and a cure for those affected by ALSP. Please enjoy our video recording of...