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

High altitude!

ALBUQUERQUE. It was hard for me to walk around there a lot, because the altitude in Albuquerque is high and my breath was getting louder with every step. Also, there were not many bright lights on at night. I always needed a friend on my side to hold his/her arm because of my night blindness - which was totally fine. Always happy about helpful  friends!

One day I drove up to the Sandia Peak by tram. After a 15 min ride I arrived at 10,378' height. Rare air but a wonderful view over Albuquerque. And I have never seen a sky as blue (favorite color!) as in New Mexico!

Further I drove to Santa Fe, the capitol city of NM - with even higher altitude than Albuquerque. As I would be way too exhausted to see a lot there while walking around, I did a road trip with a friend. Lazy me. The combination of mountains and little mud houses was fantastic. Especially the Canyon road with all its different art galleries was really, really pretty!

Sandia Peak, tunnel vision for beginner

Sandia Peak, NW view on Albuquerque

Canyon Road, Santa Fe

Art enriches the soul

Role model for Aqua-Terra / Terra-Aqua

Role model "pretent you would need glasses" (..what a joke!)

DENVER. Yesterday I visited the Denver Art Museum. I saw an exhibit of Joan Miró and  impressive realistic Sculptures by John de Andrea, a local artist. As I wasn't allowed to take pictures I unfortunately can't show these impressions here.

But what I can share here, is the art of an artist from New York City. Francisco Alvarado-Juárez. I was walking towards his art and he asked me if I want to be his role model - I agreed. The name of his artwork is Aqua-Terra / Terra-Aqua, 2015. It took him 23 years to finish it.

These pictures cannot describe how unreal it felt to stay in this tiny wonderland. The sounds of wales who communicated from one side of the room (ridiculous distance) to another, were noticeable. Artistic plants on the walls, which seemed to be a coral reef, were moved by weak wind. Insects, which were fixed at the ceiling, joined the slow movement. Videos with waves reaching the beach were shown among all the plants.

Everything seemed to be easy to create as it actually wasn't at all. What I appreciate the most in this kind of art is that 3 different senses are affected. The tactile sense (gusting wind), the sense of hearing (wales) and the sense of vision (everything else). This is vivid art. Experience it live. 

http://www.franciscoalvarado.com

Skylines

CHICAGO. I love Skylines. They seem to be the summary of a city because both end sides of the skyline are visible in one sight. My tunnel sight is still not too bad, so that it still allows me to see the full skyline of most of the cities from a relatively near distance. I hope this will stay possible for a while.

In Chicago I did the popular architecture boat trip on the Michigan river. Inspiring buildings everywhere. Modern, fire resistant skyscrapers represent the city. Why so worried about fire? The Chicago fire in 1871 burned down nearly the entire town which was built out of wood - including the streets.

My appreciation to all the fantastic architects who recreated the city to something wonderfully. Have a look at the current skyline of Chicago - impressive!

Skyline of Chicago, Illinois

Comic Vision

Comic Vision at The Carlu

Comic Vision at The Carlu

TORONTO.  Impressive! Over $220,000 were raised at the "Comic Vision 2015" that I visited in Toronto last night. It's a national donation event in support of the Foundation Fighting Blindness Canada.

The dinner is combined with funny but principally inspiring stories about vision loss. Donation games and live auctions had also been part of the evening.

One of the speeches was held by Molly Burke. She is such an inspirational young lady. She shares hope. 

Check out what she's doing as a totally blind motivational speaker: 

http://mollyburke.ca/what-to-expect/ 

Imagination?

Welcome everyone!

In this blog I try to give you an insight, how a life with the Usher syndrome can look alike.

As I found out, it is really hard for people who aren't affected to understand a persons restrictions through the Usher syndrome. 

At the moment I am travelling through the US - a.l.o.n.e - which means a lot of unexpected situations and unfamiliar areas are up to come.

Through my Facebook page you are always up to date, on the Fanpage there will always be the link of new blog text.

Here a short insight of the places in the US that I’ve already visited - stories will follow:

Germany meets Japan in PA,USA

​Enjoy!

Oh Helen Keller.. Washington DC

Face your shadow - NYC