WashU Lab Tour and Family Conference

Mitchell-Syndrome families from St. Louis, Pennsylvania, Los Angeles, and Puerto Rico join some of WashU's physician scientists from The Miller Lab at WashU's brand new neuroscience building in St. Louis, MO.

On Friday, Sept. 6, four Mitchell Syndrome families gathered in St. Louis, Missouri, at Washington University’s brand-new Neuroscience Building. WashU is conducting research into Mitchell Syndrome and possible treatments, and we were glad to get very promising updates from Dr. Tim Miller, Director of The Miller Lab, and physician-scientist Dr. Zita Hubler. Dr. Selena Cui also presented the status of the Natural History Study of Mitchell Syndrome, and Dr. Bob Bucelli, Scientific Advisor with The Mitchell and Friends Foundation, visited with families to answer questions.

The WashU staff was incredibly hospitable and pleased to show us some of the lab space where they are conducting research into cutting-edge ASO gene therapy treatments. They tolerated our rambunctious children who turned their shiny new conference room into an art studio and playroom. We were also honored to visit with Dr. Jin-Moo Lee, head of the Department of Neurology, who gratefully received our latest $25,000 donation to the WashU Mitchell Syndrome Fund, which helps pay for ongoing research. Given that WashU is donating much time and energies to research Mitchell Syndrome, we did our best to express our inexpressible gratitude for the work they are doing and the excellence with which they are doing it.

That evening, all four families gathered for conversation and Bandanas BBQ. We discussed preparations for the next evening’s trivia night fundraiser. (Exciting trivia night update coming soon!) Siblings played on the floor, parents connected with patients and each other, and we generally enjoyed the company of that small group of people who know what it’s like to live with an ultra-rare, life-threatening neurological disorder. We have a long way to go to finding a cure for Mitchell Syndrome, but we get closer—to each other and to a cure—every year.

Thanks for your ongoing support which makes this research possible, and which is giving hope to families who did not have it before.