Wolfram Syndrome Awareness Day is held on October 1st each year. This day was chosen because it is the anniversary of the publication of a 1998 paper on the discovery of the WSf1 gene associated with the syndrome. The day is dedicated to raising awareness of this rare genetic disorder, which affects the body’s metabolism, nervous system, and senses, and to encouraging support for research and treatments.
On May 21, 2025, The Snow Foundation convened a group of patients (3) and caregivers (4) from across the Wolfram syndrome (WS) community for a virtual patient listening session with over 40 representatives from the Food and Drug Administration (FDA). The small, informal virtual meeting was designed to allow community members to share their lived experiences, perspectives, and unmet needs with FDA.
National Research Council of Italy: Project application
Title: Novel experimental therapies to treat blindness in Wolfram syndrome
Applicant: Dr. Vania Broccoli
San Raffaele Hospital/CNR-Institute of Neuroscience, Milan Italy
Eye gene therapy for restoring WFS1 gene function in Wolfram mice
Extending into 2026:
- This work will be done in conjunction with a grant from the Be a Tiger Foundation
- This 12-month project aims to determine which cells in the retina will need to be the target of gene editing or gene therapy vectors.
- Understanding which retinal cells are affected will help gene editing provide a more complete cure for visionloss in Wolfram syndrome.
About the Snow Foundation
The Snow Foundation is a collective voice for Wolfram syndrome patients, working towards a cure for Wolfram syndrome and developing novel therapies for diabetes, vision loss, hearing loss and neurodegeneration.
Rare Diseases…Common Problems
P.O. Box 50224
Clayton, MO 63105
(636) 448-4134