I’m Heidi Edwards, President and founder of Sisters Hope Foundation, a non-profit organization supporting families struggling with Hereditary Diffuse leukodystrophy with spheroids or HDLS. HDLS... read more
Families & Caregivers
Sister’s 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.
Listen To Our Podcasts
Story Behind Her Success Podcast
Mental Health toolbox Podcast
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.Learn More