Between 2009 -2011, many things happened around me, and I decided to stay in academic medicine and find a cure for Wolfram syndrome at the end of 2011. I felt that this was my last research project. I changed my plan. One of the incidents that changed my trajectory was my meeting with Nolwen.
I flew to Paris in the Spring of 2009, and met with Nolwen who had a son with Wolfram syndrome. What I learned there was that she also asked Dr. Timothy Barrett MD, PhD in England, Dr. Yukio Tanizawa MD, PhD in Japan, and Dr. M. Alan Permutt MD in the US to come to Paris. They were the best Wolfram syndrome researchers in the world at the time. Dr. Permutt was not there because of his illness, but I met with Dr. Barett, Dr. Tanizawa, and other Wolfram researchers in Europe. I was much younger than others, but was recognized as a leader in the field, which surprised me. Nolwen was very clear. She asked us to find a cure for Wolfram and promised that she would raise money for the research.
We discussed the strategies for two days and agreed to establish the Wolfram syndrome patient registry to understand the disease as a first step. I came back to the US and called Dr. Permutt. He sounded weak but agreed to establish the patient registry together. With the funding supports from Washington University and University of Massachusetts, the International Registry of Wolfram Syndrome was established in the Fall of 2009 and Dr. Permutt became the founding director of the registry. He also established a research clinic in 2010.
Between 2009 -2011, I felt that many researchers started accepting my ER stress theory although it was still controversial. Dr. Decio Eizirik MD, PhD, a prominent diabetes research in Europe, published multiple articles that supported our theory, which really helped me. I felt encouraged.
In the Spring of 2011, I was trying to decide whether or not I should stay in academic medicine. I gave a lecture on Wolfram in California and was on my way back to Massachusetts. That’s when I got a surprising call from Dr. Permutt when my plane landed at Newark airport.