It's that time of year again...Superbowl time and our Super Bowl Squares Fundraiser!   Help support SHF by selecting your...

Vigil Neuroscience presented their findings from 6 patients during the first 6 months of the Phase 2 Ignite proof-of-concept clinical...

Survey about genetic testing Vigil Neuroscience, a biotechnology company researching potential treatments for ALSP, is engaging with the ALSP patient...

United Leukodystrophy Foundation invites you to join the webinar presented by Dr. Joshua Bonkowsky and Monika Baker of University of...

“Your test is negative.”... Hearing these words, my husband and I just clung to each other and cried.   There are...

Interested in the ALSP Run N' Roll Raleigh but not local to Raleigh, NC? No worries! Participate virtually from anywhere...

We need your help spreading the word on our 1st in-person Run N’ Roll 5K. If you are not local...

by Erin Sullivan I often ask myself, “How did I get here?”  No one anticipates having a familial genetic mutation...

The ALSP Community was together for the first time to interact with physicians, scientists and researchers who understand the complexities...

THE CENTRAL PA PEOPLE AND PERSPECTIVES PODCAST features Jenna Clay and Christine Ricci who each week discuss a topic that...

Sisters’ Hope Foundation is excited to launch the 1st Global ALSP Medical & Scientific Advisory Council. The SHF Medical & Scientific...

Since Vigil Neuroscience was founded in 2020, our team has been dedicated to developing a treatment for ALSP. We are...

Thanks to the hard work and dedication of our Board Member, Kim Cade, ALSP has been added to the Diseases...

It's "Find Your Voice" Friday! Last year was hard on me for various reasons but one day I decided I...

The ALSP Community has lost a beautiful woman, Cacie was known in our small community from the day she connected...

When you start a non-profit to save your family from a devastating neurodegenerative disease, it is really difficult to “take...