Join a patient community and registry for those living with Adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP)
A new patient-focused foundation is working to connect ALSP patients to the latest research and to a global community.
ALSP diagnosis and symptoms can be overwhelming for patients and their families. Foundations, researchers, and doctors are working together to better understand the cause of ALSP and develop novel treatment options.
Connecting with patient-focused groups can provide you with the support you need and where you can learn more about emerging therapies. To learn more about ALSP, please fill out the interest form below.
About Adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP)
ALSP is a fatal neurological disease characterized by break down of the white matter in the brain. White matter insulates the wiring that connects neurons and its integrity is critical for proper brain function. Personality changes, including depression and a loss of social inhibition, are among the earliest symptoms of ALSP. Also, some people with ALSP can develop mild seizures. As the disease progresses, patients suffer from a severe decline in cognitive ability. Clinical studies of ALSP points to a loss of one specific cell type in the brain called microglia. Many ALSP patients carry mutations in the CSF1R gene, which is known to regulate microglia function and survival.
About Our Patient-Focused Registry
The goal of this registry
We have two main goals for our registry. 1. To connect patients to a growing community of families, clinicians and the Sisters’ Hope Foundation; and 2. To provide opportunities to patients diagnosed with ALSP for participation in clinical studies.
For ALSP patients: We aim to develop a better understanding of ALSP patients, when they are diagnosed, what their symptoms are, and how we can work with them to better identify potential treatment regimens.
ALSP patient families: We will be focused on providing patient families support, by connecting them with foundation relations, physicians, and researchers who are working to treat ALSP.
A message from Heidi
Sisters' Hope founder and President, Heidi Edwards, talks about her motivation to help find a cure for ALSP in this video.
Engaging with the patient community
The registry connects patients and loved ones living with ALSP to others all around the world who are doing the same.
Connect to global research
Members of the registry will be able to connect to and communicate with the leading physicians and researchers studying ALSP
Additional screening
Opportunities for additional screening assessment, including biomarker discovery for ALSP screening
Contributing to research
For patients who wish to help accelerate clinical research into ALSP, the registry will provide opportunities to contribute, including opportunities to donate cells.
Joining a patient group and registry to help support the ALSP community and advance research
Who is this study for?
This registry is for patients and their loved ones who fit the following profile:
Patients diagnosed with ALSP. Ideally patients less than or equal to 36 months since their ALSP symptom and diagnosis onset
Patients that have a documented mutation in the gene CSF1R
Family members of those who have been diagnosed with ALSP
What should I expect?
- Increased interactions with Sisters’ Hope
- Communicate with physicians and researchers studying ALSP
- Opportunities for additional screening assessment, including biomarker discovery for ALSP screening
- Offer members opportunities to partner with leading researchers through blood donation
Please join our registry today
Please join our registry today to access upcoming community events and to learn about research opportunities.
Frequently Asked Questions
Can you tell me more about Sisters' Hope?
Established in 2020, Sisters’ Hope Foundation is a 501(c)3 approved, non-profit organization dedicated to ALSP patients around the world.
Our goal is to increase awareness and understanding of adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP), support those living with or caring for those living with ALSP and creating connections for the ALSP community. Our mission is to see the first survivor of ALSP.
Additional Resources
Visit information
Upcoming events
You are invited to a Zoom meeting. When: May 24, 2022 07:00 PM Eastern Time (US and Canada)
Register in advance for this meeting: https://us02web.zoom.us/meeting/register/tZAqcuGqrjwoHdxj8Q13Kyzo4xQBYvi4cUXw
"After an ALSP diagnosis many of our families were told there was nothing that could be done but treat the symptoms. All we wanted for our families was a fighting chance, a chance to save future generations. We now have a chance to save our families from this devastating disease by working with industry partners on a cure."
- Heidi L. Edwards, President & Founder, Sisters' Hope Foundation
Need help or have any questions?
Call toll free or text us at (415) 326-8829, email [email protected], or chat with us here.