HAPPY NEW YEAR

Another year has almost passed. Researchers all over the world try to find solutions to find a therapy for the still incurable Usher Syndrome.

One of my highlights this year as a patient was my visit at a lab in Boston (Boston Childrens Hospital and Harvard Medical School). Dr. Gwenaelle Geleoc and other researchers work on a very promising research project on USH2A. I visited Gwenaelle in her lab to meet her and her team in order to get to know them better. So far, USHER BRIGHTNESS supported the project a little bit with a generous donation of EUR 1065,00 by my Grandma, Hedwig Heimann. I will keep you updated.

In case you would like to donate to the project, please let me know by mail: laura@ushrbrght.cc

Happy New Year!!

Gwen and me in her lab in Boston

Face your shadow

Statue of Liberty

One World Trade Center

NEW YORK.  As I'm doing this US trip on my own it's sometimes just my suitcase and me. After I already saw a bit of VA, DC and PA, my next stop was NY. I arrived during the day time. That's what I always try to arrange at places that I don't know well. My night blindness starts with the dusk.

I stood in the main hall of the Grand Central Station and planned to visit a friend downtown. I struggled to walk from one side of the hall to another. There were so many people crossing my way from every direction. My tunnel sight made me feel very insecure and I walked more slowly.

Anyway, I finally arrived at "The Setai" and went to the roof top of the building with my friend. The sun was out. When I saw my shadow on the floor I thought of facing my disease. I accepted it, turned around and enjoyed the wonderful view over downtown Manhattan. I mean, I can still see it.. Cheers!

News on Usher Research

BOSTON.  Today I met Michael Sandberg at the MA Eye and Ear infirmary in Boston. He is an associate Professor of Ophthalmology and has a research experience for over 40 years. 

What are the news for the Usher research? There are Research projects going on which are promising to lead to a preservation of sight. Potentially they can be tested in humans within a few years. 

Preservation of sight does not mean a total cure, but at least people like me would not go blind and would be able to take care of themselves visually in the future. 

I am glad, that researchers like Dr. Sandberg exist who preserve hope in patients. Thank you!