Counting My Blessings Have you ever seen the movie Jack? In case you have not, Robin Williams (Jack) is the lead character who has a rare condition causing him to age three times as fast on the exterior. This is a good comparison when speaking of Wolfram Syndrome because as a 27 year old Wolfram […]
Statistics are only numbers but for me they are motivation to stay physically active and nutritionally sound. After turning 27-years old I thought about the Wolfram Syndrome statistics of 28-31 years of age as the life expectancy. I do not believe it will happen next year but at the same time I will not deny […]
My uncle and aunt from New Orleans, LA are retiring and moving to Wilmington, NC during August this year. As a welcome to Wilmington party the rest of the family helped to prep my relative’s new home. We tried to show them a good time by going to restaurants and with trips to the beach. […]
Some people say that it is not realistic to develop a novel therapy to stop the progression of eye manifestations in Wolfram syndrome. I don’t agree. It is possible. If we can modulate ER stress in retinal cells, we can slow or stop the progression of optic nerve atrophy in Wolfram syndrome. I have found a […]
It is difficult not to imagine what the future may hold when medical breakthroughs are on the horizon. Conversations took place during the last Wolfram clinic regarding clinical trials next summer. Clinical trials are fascinating movements forward in the lives of Wolfram Syndrome patients. After hearing the news that research is going well and treatments […]
By Adam Zwan The 2014 Wolfram clinic occurred last week and it was a fantastic one to say the least. It seems that Washington University of St. Louis research clinic has found its second wind because the entire Wolfram research event was operated with ease and everyone, patients and professional, was enthusiastic and relaxed. The […]
Everyone keeps telling me to be proud of myself for dealing with everything I am going through associated with Wolfram Syndrome and not be so hard on myself for any unexpected issue; it seems to always be easier said than done. I know that I have had my fair share of health issues and I […]
The American Diabetes Association (ADA) held its annual convention in San Francisco this year at the Moscone Center. Having never been to California, I was thrilled when asked to attend and help work the booth for the Jack & J.T. Snow Foundation. I was told that the purpose of the booth was to increase awareness and […]
Strange Truth Do you live a risky life or do you fly straight and narrow? After being diagnosed with Wolfram Syndrome I began paying close attention to my surroundings and the lives of others. Strangely, it became clear that individuals who live life without taking chances or making risky decisions end up with the dull […]
What is Taekwondo to Me? As a Wolfram Syndrome patient, I have learned that controlling my diabetes and my overall health can slow down the progression of any illness. Thus, I have become a huge advocate for fitness and nutrition as a means of promoting quality years of life. Health is a broad term that […]
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