“In July, I had a genetics test done to see if I carry the CSF1R gene variant the same variant that has caused adult onset... read more
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.
September is Leukodystrophy Awareness Month
News & Stories
Vigil Neuroscience, a biotechnology company harnessing the power of microglia for the treatment of neurodegenerative diseases, announced today the enrollment of the first subject in... read more
Vigil Neuroscience has revealed the first condition that it will target: a rare, genetic neurodegenerative disorder called ALSP, or adult-onset leukoencephalopathy with axonal spheroids and... read more