Sisters' Hope Foundation

03/15/2026

03/15/2026

The Hope Mobile made its Florida debut in the St. Patrick’s Day parade located in Downtown Melbourne Florida.

Great job to the parade volunteers. Thank you to the spectators who supported us.

Eris, the official dog of SHF walked in the parade with John Edwards and Justin while Heidi Brenneman Edwards jumped in and out of the Hope Mobile handing out SHF swag. Shauna Edwards took care of safely operating the Hope Mobile through the streets with a large crowd of people. Downtown Melbourne showed up and did not disappoint.

If you have a picture of the Hope Mobile or the awesome swag we handed out, post with and .

03/15/2026

At ULF’s 2026 Family Conference in June, we plan to offer testing with long-read Whole Genome Sequencing (LR-WGS) for attendees who have been diagnosed with leukodystrophy but not diagnosed with a specific gene variant.
This is an excellent opportunity for you to participate in a research study that is being led by Dr. Josh Bonkowsky, together with Dr. Genevieve Bernard and Dr. Tomi Pastinen. Please follow this link for a description, summary of eligibility, and required information to participate. https://ow.ly/WNI250YoAEJ
If you have any questions, please address them to Dr. Bonkowsky at joshua.bonkowsky@hsc.utah.edu. We also encourage you to share this opportunity with others in the leukodystrophy community who may benefit from or need access to this information.

02/28/2026

Thinking of all our rare disease warriors!

02/02/2026

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