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Families & Caregivers
Sisters’ Hope Foundation
The only community in the world connecting ALSP patients, families and caregivers.
Established in 2020, Sisters’ Hope Foundation is a 501(c)3 approved, Pennsylvania based, non-profit organization. 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.
What is ALSP?
Adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP) is a rare neurological condition caused by an autosomal dominant genetic mutation in the CSF1R (colony-stimulating factor 1 receptor) gene. ALSP is characterized by symptoms of reduced cognitive function and mobility.
Are you or a family member living with ALSP or do you know someone affected by ALSP? Show your support for the ALSP Community by posting and sharing #IAmALSP on social media. Learn more about our I Am ALSP campaign and submit your story.