NeuroRestorative Therapy
I am pleased to announce that we have launched the NeuroRestorative Therapy team in the Hope Center, Washington University Medical Center. We are a group of neurosurgeons, neurologists, ophthalmologists, bioengineers, and geneticists like myself. The mission of our team is to restore neurological functions in patients suffering from diseases that impact the human nervous system through […]
Wolfram Syndrome Annual Conference in UK
This year’s Wolfram Syndrome Annual Conference in UK was successful again. I could connect with patients and doctors in UK again. I learned a lot from them. I would like to thank Tracy Lynch, Paul Lynch, Alan Nye, Lottie Nye, Dr. Timothy Barrett, Dr. Patrick Yu Wai Man, Dr. Karen Morrison, and all the patients […]
Kids with special needs are not weird or odd. They only want what everyone else wants–to be accepted!
My friend and colleague, Mrs. Tracy Lynch, posted the following comments on her FB site. Tracy is the Chief Executive of the Wolfram UK, the largest Wolfram syndrome patient organization in the UK. Her daughter has Wolfram. I completely agree with you, Tracy. Kids with special needs are not weird or odd. They only want what everyone […]
Thank you, St. Louis Rams and Coach Fisher. I am proud of R.
The Snow Foundation has been invited to St. Louis Rams vs San Francisco 49 ers game on Sunday November 1st. One of our patients, Raquel, served as an honorary captain of St. Louis Rams. She was in charge of the coin toss and did a wonderful job. I was proud of her accomplishment. I would […]
Shoot for A Cure! Thank you for your support!
The Snow Foundation hosted a fundraising event for Wolfram syndrome yesterday in St. Louis. So many people came to the event and supported our quest for a cure for Wolfram syndrome. I would like to thank, Mrs. Stephanie Snow Gebel, Mr. Barclay Gebel, Dr. Saad Naseer, and others who organized this event. I cannot thank you […]
Did my best
I had an important meeting today. I did my best. I will find out the outcome soon. Thank you for your support, everyone. Warmly,Fumi Urano
Wolfram Syndrome Annual Conference in UK
This year’s Wolfram Syndrome Annual Conference in UK was successful again. I could connect with patients and doctors in UK again. I learned a lot from them. I would like to thank Tracy Lynch, Paul Lynch, Alan Nye, Lottie Nye, Dr. Timothy Barrett, Dr. Patrick Yu Wai Man, Dr. Karen Morrison, and all the patients […]
Progress?
Are we making progress? Yes, we are. We have discovered FDA-approved drugs that can potentially delay the progression of Wolfram. We are actively conducting a trial using one of these drugs in one of our mouse models of Wolfram syndrome. The results look promising, but I have been trying to be cautious. Our collaboration with […]
Headache?
Is headache related to Wolfram syndrome? This is a difficult question because most of us experience headache even though we don’t have Wolfram syndrome or other medical conditions. As far as I know, headache may be related to autonomic dysfunction or neuropathy in Wolfram. Some patients experience sharp and stabbing unilateral pain similar to trigeminal […]
Wolfram Syndrome Annual Conference in UK-Thank you Stephen
As I mentioned yesterday, the Wolfram Syndrome Annual Conference in the UK was quite successful. The format was well-thought-out. In the morning, doctors gave lectures. In the afternoon, each doctor had an individual room for consultations and answering questions from patients/families. I learned a lot from patients in the UK and appreciated that they shared […]
Urinary tract infection in Wolfram syndrome
Recurrent urinary tract infection (UTI) is one of the most common clinical challenges. The bladder dysfunction caused by the central and peripheral neurologic dysfunction is thought to be the underlying cause of UTI. Urine culture is recommended for Wolfram patients with fever or other symptoms, such as headache. Inflammatory conditions associated with UTI may cause […]
Connecting with patients, nurses, coordinators, and doctors in New York City
I gave a lecture on Wolfram syndrome at the Berrie Diabetes Center, Columbia University Medical Center, in NYC last week. I could connect with patients, doctors, nurses, clinical coordinators, and researchers in New York City. I was impressed by their enthusiasm for developing treatments for Wolfram syndrome. I could establish important collaborations there. Please stay […]