Washington University Research Clinic Update
Washington University School of Medicine
Wolfram Research Clinic Update- Tamara Hershey, PhD
Dear Research Clinic Families,
As you now have heard from Samantha, I have determined that the Wolfram Research Clinic that was tentatively scheduled for July 2018 will not be able to happen. This was a very difficult decision, but ultimately, we felt it was the most ethical choice. Due to delays in NIH’s funding decision and its impact on our ability to prepare, we just could not provide the kind of experience you deserve and that the research demands. We felt that having a clinic under those circumstances would be a disservice to us all. Please know that we care deeply about you and this research and will start planning with enthusiasm once we get our funding notification. I’m assured by NIH that it will come soon, but there are many bureaucratic hurdles that they have to overcome due to their backlog. While we are very disappointed that the clinic will not happen as we had originally imagined for 2018, we already have several ideas of what we could do to make future clinics even better, such as Tasha’s work on the questionnaires, holding mini clinics throughout the year, and adding some testing of siblings without Wolfram Syndrome. We also continue to work towards analyzing and publishing the data that have already been collected, thus providing other researchers and clinicians with important information. We appreciate your understanding and apologize for the uncertainty that the funding situation has caused. We will keep you informed of any new information. Please feel free to contact me personally with any questions.
Sincerely,
Tamara Hershey, PhD
Professor, Psychiatry & Radiology Departments
Lab Chief, Neuroimaging Labs (NIL) @ MIR
Co-Director, Neuroscience PhD Program, DBBS
Washington University School of Medicine
Email: tammy@wustl.edu
Need Help? For questions or requests regarding the Wolfram Syndrome Research Clinic please contact the WFS Research Clinic Coord., Samantha Ranck, MSW at 314.362.6514 or rancks@npg.wustl.edu