As I mentioned yesterday, the Wolfram Syndrome Annual Conference in the UK was quite successful. The format was well-thought-out. In the morning, doctors gave lectures. In the afternoon, each doctor had an individual room for consultations and answering questions from patients/families. I learned a lot from patients in the UK and appreciated that they shared their personal experiences with me.
I was quite moved by Kelly Bassett’s comment. Her husband, Stephen, suddenly passed a way a month ago due to a complication of Wolfram. Stephen’s brain was donated to the research team in the UK and I can access to the information and sample. We are racing against time, and I was moved by his selfless act at the end of his life. We need to develop new treatments for Wolfram. That is my No. 1 priority.
Thank you for reading my blog. I will have a very important meeting on this coming Tuesday in the US. Please wish me luck. It is very, very important to save our patients.
Warmly,
Fumi Urano