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!!