A Journey to Genetic Testing – The Results

“Your test is negative.”… Hearing these words, my husband and I just clung to each other and cried.   There are not enough words to express […]

A Journey to Genetic Testing – Part 2

On an early morning, with sleep in my eyes and coffee in hand, I answered the phone prepared for an hour-long conversation with a genetic […]

A Journey to Genetic Testing

by Erin Sullivan I often ask myself, “How did I get here?”  No one anticipates having a familial genetic mutation that can cause a terminal […]

Heidi Edwards Featured on People and Perspectives Radio Program

THE CENTRAL PA PEOPLE AND PERSPECTIVES PODCAST features Jenna Clay and Christine Ricci who each week discuss a topic that affects the people of Central […]

ALSP Aware Program from Vigil Neuroscience

Since Vigil Neuroscience was founded in 2020, our team has been dedicated to developing a treatment for ALSP. We are very pleased that our efforts […]

Phase 1 Clinical Trial Evaluating VGL101

When you start a non-profit to save your family from a devastating neurodegenerative disease, it is really difficult to “take the emotion out of your […]

Please join Sisters’ Hope Foundation in welcoming our newest Board Members

Erin Sullivan Erin will be leading the Patient & Caregiver Support Group meetings beginning in 2023. Erin has been an advocate for ALSP since connecting […]

Kim’s ALSP Story

“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 […]

Vigil Neuroscience Enrolls First Subject in ALSP Study

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 […]

Vigil Neuroscience hopes to eventually target ALSP

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 […]