Washington University School of Medicine Wolfram Research Clinic Update- Tamara Hershey, PhD The main activity in our lab right now is the furious planning process for the 2018 Wolfram Research Clinic! However, we also have some other progress to report. First, in the past month, we have submitted two new papers on Wolfram Syndrome […]
“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 […]
Yes, we’re still waiting! No word yet on the final determination of funding for the 2018 Wolfram Research Clinic. But, as we said, we are proceeding with the planning. We wanted to share with you the final dates of the clinic and a couple of changes from previous clinics. The official clinic dates are Wed., 7/11/18 […]
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 […]
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 […]
Professor Patrick Yu-Wai-Man Affiliations John van Geest Centre for Brain Repair, Department of Clinical Neurosciences, University of Cambridge MRC Mitochondrial Biology Unit, University of Cambridge Cambridge Eye Unit, Addenbrooke’s Hospital, Cambridge University Hospitals Moorfields Eye Hospital and UCL Institute of Ophthalmology, London I am an eye doctor (ophthalmologist) with a particular interest in genetic eye […]
Dear Wolfram Families and Supporters: The Washington University Wolfram Research Clinic (or ‘natural history) study just finished its 8th consecutive year of assessing patients with Wolfram Syndrome. This work began in 2010, supported in part by the Snow Foundation. For the past 5 years, it has been supported by a National Institutes of Health grant […]
Part 3: My Fight Continues – Pat Gibilisco Money was the only reason my child was not able to receive the drug that would potentially save her life. The Snow Foundation, or I should say Stephanie Gebel, worked so hard to raise money for all children affected with WS. She had to beg people, year […]
Part 2: The Journey Continues Dr. Permutt and Jon Wasson, who helped discover the WS gene and named it WSF1, were leading the first-ever WS clinic in St. Louis. Dr. Hershey and many other fabulous doctors from Washington University in St. Louis and other areas of the United States, started the first database of WS […]
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