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

Widespread beauty

Ship creek, Anchorage

ANCHORAGE. In Alaska I had positive and negative experiences. Since the beginning of my journey, I was looking forward to see Alaska, my last stop. When I arrived in Anchorage, I was a bit disappointed.

I did not like the downtown area. So I shared a tandem with a friend and cycled along the water side. There we saw some beautiful areas, e.g. Ship creek. A lot of people - inhabitants and tourists -  go fishing for Salmon there every day. 

Another day I took a train to Seward, a little town south of Anchorage. As soon as I'd been 30 min out of Anchorage, there was untouched nature everywhere. For the rest of the train ride (4 hours) there was no sign of humankind out there. It was wonderful.

Trees died because of salty sea water which came with rising sea level

Seward, AK

Still existing glacier

Most of the places are just reachable by plane. That's why a few people here in Alaska legally own little aircrafts in their backyards. In Alaska, there are more registered aircrafts than automobiles! Another highlight here are the short nights in the summer. 22 hours daylight. I had to think of the white nights that I saw in St. Petersburg, Russia, once. As I am night blind, it was literally heaven for me!

Heartbreaking

VANCOUVER. In Vancity I enjoyed the combination of urban and natural areas a lot. Downtown, on Granville street, there was a “Heart of Europe“ festival going on. Many people were sitting on both sides of the street, enjoying a drink in a restaurant or cafe on this sunny day. On the street itself there were little stands with information about different countries in Europe.

Heart of Europe Festival, Vancouver

As soon as I reached the waterside of the city, I saw beautiful mountains, covered with many trees. Little aircrafts were taking off to Vancouver island at the shore. Some people were sailing on the sea and I had to think of those beautiful days with my friends at the Starnberger See back in Germany, drinking a Cappuccino or Cocktail at the Undosa cafe. Love it.

Waterside of Vancouver

In the evening I walked down the streets and crossed Hasting street. What I saw there was the completely opposite of beauty. Homeless people were sitting around everywhere, most of them drug addicts. While passing them I saw lots of needles laying on the ground. 

I saw lots of hobos (homeless) in the US too. And unfortunately, seeing them destroyes my good  picture which I have of a city when leaving. Those people need help as soon as possible. Help to change their mind. Some of them chose to live on the street, some did not. I think everyone deserves a chance to develop a free mind, to create something progressive in this world. It’s gonna be positive for all of us. Lets think of a solution to this big problem. 

Acceptance?

SAN FRANCISCO. Last friday there was the decision about a comprehensive law of legal gay marriage in the US. Who's not talking about it? The weekend after, the pride parade took place in some countries. I visited the pride on Market street in San Francisco.

What I saw, were people with a happy and relieved face. Even though the right for gay marriage already existed here in California, this comprehensive law leads us all to more equality, freedom and acceptance in general.

I think, Helen Keller, a very well known deafblind American from the end of the 19th century, would like today's little step towards a more open minded community to equality. With it comes more acceptance. When I was in Washington DC last February, I visited the National Cathedral to see the place where Helen Keller's ash has been located. 

National Cathedral, Washington DC

Helen Keller's tombstone

On behalf of those with a disability there is to say that we also want to be an included part of the community. Some might be more or less different from the main part of society, but aren't we all different? Every culture, religion and disability brings its pros and cons. 

I think, a gapless system of inclusion could make a positive difference for disabled people to find their way into community – sooner or later.

Vamos a la playa

State street on Memorial day, Santa Barbara

A piece of Santa Barbara's beauty

SANTA BARBARA. Summer time and the beach. I walked down state street with all its cute little shops until I arrived at the beach. It was a bit windy but still warm enough to lay down on the bright sand.

The sun is shining and I was walking around with my sunglasses. The night blindness is immediately present – as soon as I put on my sunglasses, it affects me as if there would be dusk and my tunnel vision gets worse. I need to be really careful what I'm doing and who's around. But I love wearing them so it's worth it for me to spend some more energy on watching out for obstacles. 

The more people around, the more difficult it gets of course. Same with my ears. To go into the water and lay down on the sand I almost always put off my hearing aids. I carry them in a little box in my bag so that they cannot be destroyed by sand or water.

Back on state street I entered a hat shop. As I came from sunny outside, it seemed to be totally dark inside. With my susceptibility to light, my eyes need to recover for at least 5 minutes until I'm able to see in a normal way within the new light situation. This can be really annoying as soon as I even have to sit down or just stay still for a while to not ran something over. The only thing I saw when I entered the shop was a "black wall" right in front of me. For minutes. 

Anyway, the shop was great and I bought a hat!

Hollywood

LOS ANGELES. Hollywood! I walked down the walk of fame. When I finally found Marylin Monroe's star, I thought: How unfortunate. It was in front of a Mc Donalds and the building was under construction so that I could barely see the star. No glamour. Anyway, she's been such a strong woman - I admire her.

To go on in my LA trip, I visited Beverly Hills and its Rodeo Dr. Beautiful! Probably the first time that I didn't see any homeless people on the street since I've been to the US. Also, I visited the Universal studios on Memorial day weekend. It was really crowded but I enjoyed it so much there.

When I was younger, I wanted to be an actress. This idea lost its value because I recognized that I would have problems to act during the film shooting with my tunnel vision. 

E.g. I took part in a school theater for a few years. I did acrobatics and acting. It was so much fun! But sometimes there was just rare light on stage, so that I struggled to act how I would normally do. It's especially because of the night blindness. I get insecure in the dusk and even more in the dark which makes me acting more carefully. I hate that. Easy things like shaking another person's hand while looking him/her in the eyes could fail. I mostly just hold my hand and the other person has to grab it. It works.