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 join our registry by signing the HIPAA authorization form and filling out the interest form via the link 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.
For ALSP 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.
About Our Patient-Focused Registry
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.
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.
Joining a patient group and registry to help support the ALSP community and advance research
Who is this study for?
- 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 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.
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
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.
How does this registry connect me to the world of clinical research?
Through our global network of clinical researchers, we aim to connect those patients who are interested with opportunities to help accelerate the search for a cure to ALSP. Our goal is 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.
