Tag Archive for: snow foundation

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Patient-Based Therapeutics Part 3

Research Update from
Dr. Fumihiko Urano

Patient-Based Therapeutics Part 3
Photo of Dr. Bess Marshall, Dr. Fumi Urano, Dr. Tamara Hershey

LEFT TO RIGHT: Dr. Bess Marshall, Dr. Fumi Urano, Dr. Tamara Hershey

Instead of introducing my research activities,  I would like to introduce my colleagues today. I have a lot of colleagues who have been helping me develop diagnostics and therapeutics for Wolfram at the Washington University Medical Center. Without their help, I cannot accomplish anything. I give many lectures and talks on Wolfram syndrome, but I feel that I am just a spokesperson or a salesman of our team.

Today I would like to introduce Dr. Bess Marshall and Dr. Tamara Hershey. Dr. Marshall is a pediatric endocrinologist and serves as a medical director of our annual Wolfram clinic. Dr. Marshall is an experienced, smart, and caring physician scientist. Dr. Hershey is a neuropsychologist and serves as a scientific director of our Wolfram clinic. Dr. Hershey is thoughtful, smart, and extremely good at getting things done. They are powerful driving force of our Wolfram project! I always appreciate their continuous support and advice. Here is their picture! (From left to right: Dr. Marshall, Fumi, and Dr. Hershey)

Dr. Fumihiko Urano a renowned physician and scientist developing therapeutics and diagnostics for Wolfram syndrome and juvenile onset diabetes.  His areas of expertise include Wolfram syndrome, type 1 diabetes, Pediatric pathology and genetics and Molecular Endocrinology.  He is currently employed at the Washington University School of Medicine where he holds the Samuel E. Schechter Professor of Medicine, 2012 – present.

 

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Living With Wolfram Syndrome – Adam’s Story

What Define’s One’s Life

Photo of Adam ZwanSome people are glorified for an invention or for a remarkable breakthrough in science.  However, others make their mark in history by being diagnosed with a rare illness that shortens life expectancy by half.  My place in history start in 1987 on September 18, living life as a healthy young man only to find health beginning to spiral downward in 1994.  The diagnosis of Type I diabetes was only the first mile marker in my marathon known as Wolfram Syndrome.  As one of 18 patients with Wolfram in the United States I found myself obligated to beat the statistics and surpass the life expectancy of 31 years old by controlling my diabetes and staying as physically active as I possibly could. I took a realistic look at myself and said that Wolfram Syndrome is the hand that I was dealt in life and it is my responsibility to make the best of what I have.

[pullquote style=”right”]I took a realistic look at myself and said that Wolfram Syndrome is the hand that I was dealt in life and it is my responsibility to make the best of what I have.
[/pullquote] fitness routine has become the highlight of my every day and I use Wolfram as my driving force to continue staying physically active.  My clique is “No one needs an excuse to exercise everyday but it’s nice to know that I have one.”  Each day starts at Gold’s Gym from 6a.m until 8a.m. then I continue teaching fitness classes from 9a.m. until 12p.m. at a wellness and rehabilitation center and then finish each day with teaching Taekwondo classes from 3p.m.til 6p.m.  Simply put, being physically active, and helping others stay active, and rising above the natural struggles of health are just a few of the things I would like to define my life.

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We Say Goodbye to a Wolfram Trailblazer and Friend

Photo of Jon Wasson and Stephanie Snow Gebel

Jon Wasson and Stephanie Snow Gebel

Jon Wasson

Yesterday our dear friend Jon Wasson passed away after a lengthy battle with Cancer. Jon was instrumental in the discovery of the Wolfram gene (WFS1). Jon worked closely with the late Dr. Alan Permutt, both bringing Wolfram syndrome research to the forefront at Washington University School of Medicine (WUSM).

Jon played a major role in establishing the Wolfram clinics at WUSM bringing together families from around the world who are dealing with the disease. Jon’s kind and personal connection with the families with Wolfram Syndrome led to the success of the Wolfram Clinic and Registry. Jon was a major supporter of the Snow Foundation and a true friend to our family. He will be sorely missed.

“Jon was always kind and thoughtful, and dedicated to our research on Wolfram syndrome. Great loss for all of us.” – Fumihiko Urano, MD, PhD – Washington University School of Medicine

“I will miss Jon tremendously. He was straight-shooting, honest, insightful and very passionate about his work, repeatedly going the extra mile to help our Wolfram Syndrome families and to facilitate our research.” – Tamara Hershey, Ph.D. – Washington University School of Medicine

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