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Why Does it Feel Like I’m Feeding her to the Wolves

Opening the doors The drive was mostly quiet except for my pounding heart beat. I looked over at Raquel in the passenger seat as she twiddled her thumbs. I felt like I could break at any moment, the nerves were getting to me. I wondered how Raquel felt? Was she ready? I sure wasn’t. Today […]

Living With Wolfram Syndrome – Lauren Gibilisco

Hello everyone.  My Botox surgery was a success.  I am happy to report that I am getting up only two or three times a night instead of every hour. I don’t feel as tired anymore through out the day.  This has made me feel so much better.   I am able to drink a lot more […]

Living With Wolfram Syndrome – Adam Zwan

A Little Worried? I feel lucky to have a family that loves me as much as they do but like everything in life there are some consequences. Before being diagnosed with diabetes and then Wolfram Syndrome, I could visit family members and make it an enjoyable event. I still enjoy seeing family but my presence […]

Living With Wolfram Syndrome – Adam Zwan

In January 2013, Adam Zwan was featured by the NBC affiliate in his hometown of Wilmington, North Carolina, WCET News. The story was to show what it is like for Adam to live  with Wolfram syndrome. That night, Adam began to experience severe abdominal pain and was rushed to the hospital where he remained for […]

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 […]

Great Changes Are Coming

I have always had great intuition (good or bad), ask my friends and family! The Snow Foundation has hired a new President and CEO, Dr. Saad Naseer, who is driven and ready to make our dreams become reality. The foundation is finally receiving the full time attention and direction it deserves, which means Wolfram syndrome […]

A Mom on a Mission!

A quick description of my job; work 24/7, deal with scientists, researchers, doctors, philanthropists, sports figures, political figures, full time advocate for rare disease, counselor for parents and patients, breakfast, lunch, dinner meetings, travel around the world, public speaker, accountant, secretary, marketing and most important Fundraiser. ​​Combine all the above and they do not equal […]

Living With Wolfram Syndrome – Lauren Gibilisco

It’s been 10 years since I graduated from High School. We had our 10th year reunion this last weekend. I had to find someone who could help lead me around. I love my mom but going to a reunion with your mom is just not cool, so I asked my friend Meredith to take me. The […]

Living With Wolfram Syndrome

Maybe or Maybe Not Originally, I was told that Vocational Rehabilitation could provide financial assistance towards a street legal golf cart. When I first heard these words I was exhilarated to think that independent transportation is a possibility. I am still not full time at the wellness and rehabilitation center I work for so financial […]

Living With Wolfram Syndrome – Adam Zwan

New Beginnings Wolfram Syndrome is a rapid aging and deterioration of the central nervous system. The damages consist of diabetes, chronic kidney failure, deafness, and blindness; it’s not anything to be ashamed of, it’s just not something worth bragging about on the first date. Throughout life I have experienced my fair share of health issues, […]