Eye Hope Foundation

Happy 2017

In 2017 we are looking forward to the results of the Wolfram-trials by Prof. Urano  with the Univesity of Washington and by Prof. Barrett with the university of Birmingham.

Of course we will continue gathering the much needed financial support for their scientific research.

We have already planned some activities:

- On the 15th of January 2017:  sold-out Bang!-event in the KBC Tower in Ghent - many thanks to Ivan De Vadder, Jan De Smet and Karl Meersman

- On the 13th of February 2017: extra Bang!-event in De Roma in Antwerp - many thanks to Ivan De Vadder, Jan De Smet and Karl Meersman

- On the 28th of  april 2017:  retorica-ball in 'de oude vismijn' in Ghent - many thanks to Sint Bavo of Ghent - more details to follow

- On the 20th and 21st of May 2017: Damme Golf CharityCup in Damme - many thanks to Rotaryclub Damme - more details to follow

- On the 1st of October 2017: Maldegem ment for charity - more details to follow

As you can see the preparations have been made for a successful year! You can support us by attending at one of our events or by donating, your gift does matter in our battle against Wolfram Syndrome!

We wish you all a lot of fun and happiness in 2017.

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Second Bang!-show

Thanks to your massive respons, we can announce you that the Bang!-event in Ghent is completely sold out. But don't worry! Ivan De Vadder and co are willing to launch their show a 2nd timein favour of the research against Wolfram syndrome.  This time in 'De Roma' in Antwerp.

For more details click here. For tickets click here

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Wolfram Research News

Newsletter from Prof. Urano: 

Dear friends, 

My highest priority right now is to work out the logistics for the upcoming clinical Wolfram-trial. As our medical center announced in November this year, we plan to start a phase 1b safety clinical trial of dantrolene sodium in patients with Wolfram syndrome.

 Dantrolene sodium is an FDA-approved drug utilized for the treatment of muscle stiffness. We found that dantrolene could prevent the destruction of insulin-secreting beta cells in animal models of Wolfram syndrome and in brain cells differentiated from skin samples taken from patients with the illness in 2014 after the 12 years of research. This drug can target the molecular pathways altered in Wolfram syndrome in cell and animal models of Wolfram syndrome. Nobody has ever tested dantrolene in patients with Wolfram syndrome, so our first and most important objective is to make sure it’s safe. We will also closely monitor patients’ vision and brain function, as well as the function of their remaining insulin-secreting beta cells based on the data collected through our research clinic study.

The major question that I get from every patient I see is, “Is there any treatment?” As you are aware, there is currently no treatment that can slow, halt, or reverse the clinical manifestations of Wolfram syndrome including vision impairment and diabetes.

I sincerely hope that this study can help change that. I have been working with Dr. Tim Barrett in the UK to conduct international clinical trials for Wolfram syndrome. In parallel, we keep on developing novel drugs and regenerative therapies for Wolfram syndrome.

As we near the end of this year, I would like to take this opportunity to thank you all for your continued support. You have provided patients with hope and emotional support. Together with you, we can make a difference in the future of our patients. Thank you again for your generous support and continued encouragement. You gave me the power and courage to continue. I cannot thank you enough. I hope you have a wonderful holiday season.

Sincerely,

Fumi Urano, MD

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Thanks to you all!!

Thanks to all of your donations, we were able to support the Wolfram syndrome project of professor Urano at Washington University in St. Louis. He is the personification of our hope to find a cure on Wolfram syndrome. 

Please realise that your donations matter and are very critical in our fight for a bright future for Bertha and Victor and all other Wolfram patients.  

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