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

USHER BRIGHTNESS 2018

Dieses Jahr danke ich von Ganzem Herzen

der Assenagon GmbH,

Herrn und Frau Anker und

Frau Bingenheimer.

Insgesamt wurden dieses Jahr EUR 4.200,00 für Projekte zur Forschung am Usher Syndrom gespendet.

Ich freue mich sehr auf ein erfolgreiches Forschungsjahr 2019! Frohes Neues Jahr!

International Symposium on Usher Syndrome

The international Symposium on Usher Syndrome took place from July 19th until July 21st 2018 in Mainz, Germany. The first two days were a scientific Symposium, so researchers presented their research projects on Usher Syndrome. The last day was a patients Symposium, so the focus was on existing tools which can make life with Usher Syndrome easier. On the patients Symposium alone there were about 250 people attending the event and about 100 people were following the live stream. 

I think it is a great motivation for researchers to meet patients and it is great for patients to learn about research on their disease. I got a great overview about the research projects on Usher Syndrome through the scientific Symposium. Also, for me as a patient it was great to see that I among all the patients and researchers am not alone in this and to talk to the researchers to learn how they want to find a cure to this disease. 

I was very happy to be part of the podium discussion and to exchange the ways of thinking about the disease and how to live with it in a good way until there is a therapy. Also, I realized that within the process of the disease there are many different stages: I e.g. can communicate very easily while for others, especially those who lost sight and hearing completely, it is very hard to communicate. Nevertheless there are great ways for them to communicate in other ways. 

I found it impressive that there are ways for Usher patients to train the brain in sight and hearing so that the brain can adapt easier to seeing and hearing when there will be a therapy one day. 

There is still a lot to find out through research but I will connect with researchers and support further projects through fundraising. I will keep you posted about upcoming projects. 

Finally, I want to thank all the organizers for making this Symposium on the most common genetic cause of combined deafness and blindness, the Usher Syndrome, possible – what a great success!! 

Internationales Symposium für das Usher Syndrom 19.-21. Juli 2018

Forscher, Fundraiser, Betroffene, sind alle herzlich Willkommen bei dem internationalen Symposium für das Usher-Syndrom 2018. Weitere Infos können Sie der Website für das Event – www.ush2018.org – oder folgendem Flyer entnehmen:

USHER BRIGHTNESS 2017

Ich bedanke mich von ganzem Herzen bei jedem Einzelnen, der dieses Jahr zwecks USHER BRIGHTNESS gespendet hat. Es sind insgesamt 1.350,00 € zusammengekommen.

Mein besonderer Dank gilt der A-Z Consilia GmbH. 

Ein Großteil der Spenden fließt in ein aktuelles Förderprojekt, welches Nachwuchsforscher mit Stipendien für die Forschung am Usher Syndrom begeistern und somit fördern soll. Und zwar findet im Sommer nächsten Jahres ein internationales Symposium für das Usher Syndrom in Mainz statt, bei dem Forscher und Betroffene zusammenkommen und aktuelle Forschungsfortschritte und -projekte vorgestellt werden (siehe vorheriger Blogpost). Die Stipendien sollen den Nachwuchsforschern die kostenlastige Anreise aus aller Welt erleichtern.

Bei dem Symposium werde ich mich insbesondere an diese Nachwuchsforscher wenden und eventuell eines derer zukünftigen Forschungsprojekte mit USHER BRIGHTNESS unterstützen. Ich werde Sie darüber wie immer auf dieser Website und auf der Facebook-Seite auf dem Laufenden halten.   

Frohe Weihnachten und auf ein weiteres erfolgreiches Usher-Forschungsjahr! 

Ihre Laura Bingenheimer 

Young Investigator Travel Award Program (YITAP2018)

Sehr geehrte Leser und Leserinnen,

eine Allianz aus Selbsthilfeverbänden und Wissenschatlern plant das IV. internationale wissenschaftliche Symposium zum Usher-Syndrom vom 19. bis 21. Juli 2018 in Mainz. Das Symposium soll Forscher, Kliniker, Humangenetiker und Spezialisten zusammenbringen, um die neuesten Erkenntnisse und Entwicklungen auf dem Gebiet des Usher-Syndroms vorzutragen.

Das Symposium soll den Austausch von Wissen und Ideen aus den unterschiedlichen Disziplinen, sowie neue Forschungen in Richtung Therapieentwicklung ermöglichen. 

Ein besonderer Fokus des Symposiums liegt auf der Einbindung von Nachwuchs-wissenschaftlern, um diese für Fragen der Neurosensorik (vom Sinnesorgan zur Wahrnehmung) und Therapieentwicklung zu begeistern und zu inspirieren.  Der wissenschaftliche Erkenntnisgewinn lebt von der Kreativität und den Ideen der Nachwuchswissenschaftler. Nur mit neuen Ideen und Ansätzen kann die Entwicklung einer Therapie für das Usher-Syndrom auch über die nächsten Jahre weitergetragen werden.     

Damit möglichst viele, talentierte Nachwuchswissenschaftler trotz begrenzter Mittel an dem wissenschaftlichen Symposium teilnehmen können, möchte „USHER BRIGHTNESS“ zusammen mit dem Forschungsförderverein „Forschung contra Blindheit – Initiative Usher-Syndrom e.V.“ diese besondere Zielgruppe der Nachwuchswissenschaft durch Reisestipendien unterstützen, sog. „Young Investigator Travel Award Program (YITAP)“.  

Hier brauchen wir Ihre Hilfe. Es wäre sehr schön, wenn Sie Nachwuchswissenschaftlern (aus aller Welt) durch eine Spende für Reisestipendien die Möglichkeit bieten, an dem Symposium teilnehmen zu können.

Wir freuen uns über eine Spende jeglicher Höhe. Sollten Sie sich dazu entscheiden, uns finanzielle Unterstützung zu bieten, so überweisen Sie bitte Ihre Spende mit dem Verwendungszweck „YITAP2018“ an:

Förderverein Forschung Contra Blindheit e.V.

IBAN: DEUTDEDBHAM

BIC: DE48200700240568882500

Der gemeinnützige Verein „Forschung contra Blindheit - Initiative Usher-Syndrom e.V.“ wird Ihnen anschließend eine Spendenquittung ausstellen.

Der wissenschaftliche Beirat von Forschung contra Blindheit – Initiative Usher-Syndrom e.V.  (u.a. Herr Prof. Dr. rer. nat. Uwe Wolfrum) wird die Bewerbungen für das „Young Investigator Travel Award Program“ begleiten und die sachgerechte Verwendung der Mittel gewährleisten. 

Als selbst vom Usher-Syndrom Betroffene und Begründerin der Initiative „USHER BRIGHTNESS“ wäre auch ich persönlich Ihnen für diese Unterstützung sehr dankbar. „USHER BRIGHTNESS“ unterstützt spezielle, für die Heilung des Usher-Syndroms vielversprechende Forschungsprojekte.  Ich würde mich sehr freuen, wenn die Forschungsprojekte von Nachwuchswissenschaftlern zukünftige Förderprojekte von USHER BRIGHTNESS sein werden und ich darüber berichten kann.

Mit freundlichem Gruß und herzlichem Dank

Ihre Laura Bingenheimer

USHER BRIGHTNESS 2016

I thank everyone from heart who supported USHER BRIGHTNESS this year.

1.615€ got raised. 

Einen besonderen Dank spreche ich Herrn Winfried Blankenburg aus, der seinen Geburtstag als Anlass für eine Spenden-Aktion nahm und eine erstaunliche Summe für USHER BRIGHTNESS sammelte.

Des Weiteren bedanke ich mich herzlich bei dem Team von Athletes for Charity für die starke Unterstützung zum Zwecke USHER BRIGHTNESS beim "Wings for Life Worldrun", der im Mai in München stattgefunden hat. 

Auf großartige Aussichten in der Usher-Forschung im Jahr 2017! 

USHER BRIGHTNESS 2015 is almost over...

...and USHER BRIGHTNESS 2016 is calling!

From heart, I want to thank everyone who supported research in the Usher Syndrome this year. Many of you probably heard of Ushers for the first time and to me, it has been very important that you know of this syndrome now and even spread my message. Thank you very much.

With gratitude, I especially want to thank the donors: 

Leonardo Schurr, Annika Onken, Lorena Onken, Karin Pirkenseer-Scherer, Regina Scherer, Nathanael Turban, Michael und Krista Koch, Karl und Dagmar Jost, Birgit Laun, Dirk und Iris Moos, Ursula Onken,Christa Deuvilaseca, Bjorn Pletsch, Lore Bender, Pius Goetz, Manfred Weilandt, Mirko Joseph Dugonik, Prof. Dr. Gert Koenig, Franz Zimny, Lothar und Erika Hahn, Andreas Hierold, Kurugoel Hact-Mehmet, Marlene Mahr, Hans-Joachim-Stumpf, Joachim u. Constanze Zehn, Evelin Heier, Magret Piening, Ruth Gruenig, Harald Gussmann, Siegfried u. Ingrid Zimmermann, Dr. Barbara Katsimbaris, Eberhard u. Christine Schell, Gabriele Wiegand, Susan Hofmann, Elfriede Pac, Anna Sauter, Katharina Peters, Stefan Buehner, Elke Betsch, Magdalene Bingenheimer, Anne Heimann, Markus Schweiger, Oliver Staab, Werner Reich, Manfred Janoschka, Katrin Leadley, Laure, Matias Porras, Anthony Montesinos, Rose Gazzerro/Langford,  Wäsch- und Grundstücks GMBH & CO. KG and all of those who did not want me to mention their names.  

A very special thank you goes to the Schrott Hofmann GmbH&Co. KG, as well as Kornelia Beer. 

4.888,00€ have been raised for two Usher projects in Germany. $310,00 for one Usher project in Canada. 

If someone of you wants to know what exactly the researchers investigate in each project, let me know by mail: laura@ushrbrght.cc

In 2016, I will give my best to get connected with researchers who will maybe find solutions to treat Usher Syndrome in my lifetime. But it is and will be the chain: Fundraiser-Donor-Researcher-Patient. Means, donors will always be an important part of this process. 

Have a great start into an exciting New Year! 

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. 

All natural

BOZEMAN. Last week I visited a friend in Montana. Such a wonderful landscape there. We visited the Yellowstone national park (YNP) and saw many animals there. My friend definitely had a better eye for those animals which were far away. It's harder for me to recognize a spot in the scenery with my tunnel vision. I probably wouldn't even recognize some of them without her telling me that they were there.

Hitchhiker in Montana

Also, we saw geysers. They were amazing to watch! It was a bit scary though to consider that there's lava near under me. Even though the geysers had a bad smell (like rotten eggs), we did our planned picnic next to them to have a nice view. Awesome. 

Mammoth Hot Springs, Yellowstone National Park

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.

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/ 

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!