Heidi Edwards
President & Founder: Sisters’ Hope Foundation for HDLS / Adult-Onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia (ALSP), ALSP and Rare Disease Advocate, Speaker, ALSP Expert
The mission of Sisters’ Hope Foundation is to support and empower families impacted by HDLS/ALSP by: • educating the public to increase awareness around this rare disease • advocating for further research and funding to improve treatment options • connecting patients and families with this diagnosis to build community and support • providing financial assistance and resources to those in need
