Blog

Living With Wolfram Syndrome – Adam Zwan

Self-confidence Having confidence in one’s self is as important in life as breathing.  Without an adequate amount of confidence a person suffers throughout life dealing with mental health.  Having a lack of confidence may make it difficult to finish tasks, create new goals, initiate relationships, and can make a person feel severely depressed.  One must […]

Patient Based Therapeutics – Part 4

Patient-Based Therapeutics Part 4 – Drug Screening Progress Based on the data obtained from our patients, animal models, and cell models of Wolfram syndrome, we found that calcium depletion of the endoplasmic reticulum (ER) plays a role in the pathogenesis of Wolfram syndrome. So we have been looking for drugs that can prevent ER calcium-depletion-mediated […]

It’s The Little Things

Hi Everyone, I have had a couple of busy weeks.  It started out with a trip to Cabela’s.  My father is an avid fisherman and he and I snuck out of the house to go there. When we go there I had to use the restroom.  I was not familiar with this restroom.  As I […]

Living With Wolfram Syndrome – Adam Zwan

Are You Trigger Happy? Portion distortion is one of the many reasons for the rapid increase in obesity among individuals in the United States.  One category of food that people tend to splurge on is called trigger food.  Trigger foods are those that individuals go to when they are multi-tasking.  For example, while watching a […]

In Memory of K by Dr. Fumihiko Urano

A Few weeks ago, a young woman who had been battling Wolfram syndrome for many years passed away.  Everyone knew, loved and supported her.  Below is a touching blog post from Washington University School of Medicine’s Dr. Fumihiko Urano about our friend, Ms. K. In Memory of K Yesterday I was heartbroken because I learned […]

Living With Wolfram Syndrome – Lauren Gibilisco

People think that when you are blind your other senses kick in to compensate. But when you are living with Wolfram Syndrome, that is not true. When I still had my sight, I was colorblind.  When I was in first grade, I used to wear one purple sock and one blue sock.  My mom told […]

It’s Only A Theory!

-By Adam Zwan With the abnormal cold weather that is occurring in the United States for the past few weeks there have been a high number of comments regarding Global Warming.  Just a few of the comments that can be heard all over the United States are: “I am really enjoying the Global Warming.” “What’s […]

Research Reports From Washington University

Introducing… the Washington University Wolfram Syndrome Study Group! By Dr. Tamara Hershey I would like to tell you about the big picture of research and clinical activities at Washington University focused on Wolfram Syndrome. There are three parts to this effort 1) Diagnostic markers and treatment  development for Wolfram syndrome using animal models and human […]

Living With Wolfram Syndrome – Lauren Gibilisco

“Some Like It Hot and Some Sweat When The Heat Is On”- Hypersensitivity to Heat Hello Everyone, I told you last week the main symptoms of Wolfram Syndrome.  Today I am going to talk about a lesser symptom that greatly impacts my life. This symptom is hypersensitivity to heat. My body has a problem regulating temperatures. […]

Living With Wolfram Syndrome – Adam Zwan

The Gift Has Already Been Given! Starting in January 2013 I was asked by a gentleman to help him run his academy teaching Taekwondo.  Being physically active and enjoying exercise as much as I do, I did not blink before I agreed to help out.  I was told that class members would range from 3 […]