News
Rare Community Profiles: Unraveling the Genetic Threads: Erin’s Quest to Test for ALSP
For those who are grappling with their own choices of genetic testing, or who are dealing with a new ALSP diagnosis within the family, Erin […]
Read More....Super Bowl Squares Fundraiser
It’s that time of year again…Superbowl time and our Super Bowl Squares Fundraiser! Help support SHF by selecting your Super Bowl Squares at https://www.cfsquares.com/game/?g=8JvHtL0c […]
Read More....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, […]
Read More....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 […]
Read More....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 […]
Read More....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 […]
Read More....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 […]
Read More....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 […]
Read More....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 […]
Read More....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 […]
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