Entries by The Snow Foundation

Accelerating clinical trials in Wolfram syndrome: development of efficacy biomarkers and patient relevant outcome measures

1st teleconference meeting report Tuesday 24 April, 2018 Report written by: Virginie Picard (Association du syndrome de Wolfram) Report validated by: prof. Timothy Barrett, project coordinator The first update teleconference meeting on Biomarker project led by professor Tim Barrett took place on Tuesday 24 April, six months after the official beginning of the project. Representatives […]

/by

Proof of Concept study in Wolfram Mice – Mitochon Pharmaceuticals

Mitochon Pharmaceuticals, Inc., Blue Bell, Pennsylvania, is sponsoring a Proof of Concept (POC) study in Wolfram mice using a mitochondrial target approach to attenuate diabetes, behavioral and functional decline. Mitochon has developed clinical stage (Phase I ready) pharmaceuticals that modulate mitochondrial physiology.  These compounds, MP101 and MP201, have shown merit in animal models of vision […]

/by

Paint Party Fundraiser

Paint Party Fundraiser   Paint Party Fundraiser in honor of Joe Mirra, Jr. is Friday, July 13 at Hubcap, 128 Center Street, Wallingford at 6pm.   Please contact Christine Mirra for more information jemirra@comcast.net or to donate  visit www.thesnowfoundation.org/donate

/by

The British Journal of Occupational Therapy

“Understanding activity participation among individuals with Wolfram Syndrome” 2018 has brought another publication from the Wolfram Research Group! This article, titled “Understanding activity participation among individuals with Wolfram Syndrome”, was recently accepted to the British Journal of Occupational Therapy. We wanted to learn more about the use of Occupational Therapy (OT) services in people with […]

/by

Wolfram Association-Georgia

Matsatso Khachapuridze from Georgia is the founder of a non-governmental organization called “Wolfram Syndrome – Georgia”. “Wolfram Syndrome – Georgia” was founded on November 29th, 2017. Matsatso decided to establish this organization because she has Wolfram Syndrome (WS). In Georgia, WS is not on the list of rare genetic diseases and there is no statistical data for this […]

/by

The Snow Foundation to Start a Patient Registry

TSF is leading the charge to find a cure for Wolfram Syndrome. A major step in this fight is to assemble an international patient registry that will help with the funding and drug development process. TSF’s patient registry will be used prospectively to quickly identify patients eligible for a clinical trial, or retrospectively to analyze […]

/1 Comment/by