RESEARCH UPDATE-Tamara Hershey, PhD

 Washington University School of Medicine

Dear Wolfram Community:

I am very pleased to announce that we have received

notification from the NIH that our Wolfram natural

history study has been OFFICIALLY FUNDED! This means

that we can start having our Wolfram Research Clinics

again, probably starting next summer and continuing for

5 more years! Samantha, Dr. Marshall and I will begin

planning for the research clinic and will keep you all informed as things move along.

We are excited to continue working with Dr. Bess

Marshall as our caring and dedicated Medical Director!

We will also continue to collaborate with Dr. Fumi Urano

by collecting samples for his lab and coordinating with

the Dantrolene trial. In addition, Dr. Tim Barrett in

Birmingham, UK will share MRIs from his clinical trial, so

that we can learn about individual differences in

neurological progression. Finally, Dr. Gordon Xu, at Mt

Sinai in New York, is helping us measure the optic nerve

with MRI. We are excited to work with all of the

incredible scientists and clinicians on our team.

Thank you for your support and patience during this

time of being in limbo. Please know that we never

stopped caring and we never stopped working on

understanding Wolfram syndrome and its effect on the

brain and its functions. We have high hopes that the

information we gain from this study will have a positive

and lasting impact on all people affected by Wolfram

syndrome! Please call me or Samantha with any questions

about the research clinic.

Sincerely,

Tamara Hershey, PhD

Professor

Scientific Director and Principal Investigator

WU Wolfram Research Clinic

tammy@wustl.edu; 314-362-5593