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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 […]

Living With Wolfram Syndrome – Adam Zwan

How To Slow Wolfram Syndrome Progression? Steps toward a cure for diabetes and Wolfram Syndrome are being made and successful results are occurring in scientific research.  The treatments are not yet available for Wolfram patients so it’s wise to attempt slowing Wolfram progression until treatments are available.  In addition to being a Wolfram patient I […]

Living With Wolfram Syndrome – Lauren’s Story

Being Sick and Having Surgery, NOT A Good Combination Hello everyone!  As you know I was going to have my surgery on Wednesday, but unfortunately on Monday night I was up every hour throwing up.  I luckily didn’t feel sick but couldn’t keep anything down.  My blood sugar started to drop a little so I […]

Living With Wolfram Syndrome – Adam’s Story

Sacrifice it or never experience it? Early in life I began having to face several limitations and make many sacrifices due to Wolfram Syndrome.  With the diagnosis of Type I diabetes at 7 years old I was asked to limit and sacrifice enriched white flour and sugars in order to manage glucose levels.  Staying away […]

The Power of Wolfram: The Weapon to Combat Type 1 Diabetes

Why do I study such a rare disease as Wolfram Syndrome? I am often asked, “Why do you study such a rare disease, Wolfram?” My answer is, “It is the weapon to combat common diseases.” My secret answer is, “I want to help Wolfram patients and their families.” Why it is so important to study […]

Living With Wolfram Syndrome – Lauren’s Story

I’m Getting Botox, But Not The Way You’d Think Today I am going to visit my grandmother celebrating her 80th birthday. I love my grandma and it is always fun to get together with all my relatives. After my doctor visit on Monday, I found out that my urologist is going to try something new […]

Patient-Based Therapeutics Part 3

Research Update from Dr. Fumihiko Urano Patient-Based Therapeutics Part 3 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 […]

Living With Wolfram Syndrome – Adam’s Story

What Define’s One’s Life Some 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 […]

Patient-Based Therapeutics Part 2

Research Update from Dr. Fumihiko Urano Patient-Based Therapeutics Part 2 We are taking an unconventional approach to develop therapeutics for Wolfram syndrome. I would call it “patient-based therapeutics.” This implies a few things. One of these is the “mechanism-based treatment.” How can we achieve this component of “patient-based therapeutics” for Wolfram syndrome? Here are our […]