Vigil Neuroscience reports Interim Data from Phase 2 Clinical Trial

Vigil Neuroscience presented their findings from 6 patients during the first 6 months of the Phase 2 Ignite proof-of-concept clinical trial. The data is promising, […]

Potential use of glucocorticosteroids (GCs) in CSF1R mutation carriers

The thoughts presented below by Drs. Dulski, Stanley, Chitu and Wszolek have significant limitations and must be read only as their personal views, and not […]

Genetic Testing Survey

Survey about genetic testing Vigil Neuroscience, a biotechnology company researching potential treatments for ALSP, is engaging with the ALSP patient community, caregivers, advocacy groups, and […]

What does it mean? 12 New ICD-10 Codes Webinar

United Leukodystrophy Foundation invites you to join the webinar presented by Dr. Joshua Bonkowsky and Monika Baker of University of Utah Health to answer your […]

Breaking News!

Effective October 1, 2023, ALSP will have an ICD 10 Code. Know Your Code…G93.44 for ALSP! ALSP Community: What can YOU do to help? It […]

Become a Team Leader for our Virtual 5K!

Interested in the ALSP Run N’ Roll Raleigh but not local to Raleigh, NC? No worries! Participate virtually from anywhere in the world! Become a […]

ALSP Run N’ Roll – 5K For The Cure

We need your help spreading the word on our 1st in-person Run N’ Roll 5K. If you are not local to the Raleigh, NC area […]

Cure ALSP

Sisters’ Hope Foundation has been working tirelessly for the past 3 years to support our ALSP community, raise awareness for this rare disease and find […]

2023 ALSP Community Conference

The ALSP Community was together for the first time to interact with physicians, scientists and researchers who understand the complexities of ALSP and are eager […]

Conference hosted by UCI and sponsored by CIRM

March 25-27, 2023, over 60 doctors, researchers, ALSP patients and caregivers gathered at the University of California, Irvine to partner and address challenges facing ALSP […]