We gladly publish the speech of Denice Toews, president of AWS Aniridie-WAGR e.V., at the Aniridia Europe Community Meeting in Alicante, on 3rd of June 2022.
My name is Denice and I’m 46 years old. I am a mother of 4 wonderful children. One of them has a very rare mutation in the PAX6 gene. He is 13 years old, and his vision is only 5 percent. Since he was born, my husband and I started searching for information about this rare disease. We found a few sufferers on the internet in the beginning. In December 2011 we founded our non-profit association with only 7 people.
I met the team of Anirida Europe, and they encouraged me to develop the association further and to join the team of Aniridia Europe. I remember our first meeting in Paris. It was wonderful. I will never forget how the videos were created and how many attempts it took, because an airplane flew over us constantly and made noise, then when it was finally quiet we had forgotten the text. We laughed a lot. More meetings followed. In Venice I was already 2 times and I also carry these experiences very deep in my heart.
In the summer of 2015, our association hosted a congress in Homburg, where Aniridia Europe also participated. My plan was to bring Aniridia Europe in contact with our Mrs. Prof. Käsmann Kellner, which we succeeded in doing. From the beginning, Mrs. Käsmann was convinced of the work of Aniridia Europe and was willing to participate in the scientific committee. In summer 2016 we hosted the European conference in Germany. It was enormously difficult to organize with a very small team, but we managed it. It was a great success for all of us. At that time our association had only 30 members.
Germany is a great country, but there are only a few doctors who are truly interested in us. We had to learn this painfully in 2018. Our association had planned and organized for over one year a medical congress in Berlin, where young doctors would have had the opportunity to learn about aniridia from specialists worldwide. Specialists from all over the world had already agreed to speak. The conference program was set, the conference hotel with top conditions had been found and hotel rooms reserved. A team of 11 members of the association helped to find potential physicians and called over 500 German clinics and ophthalmologists or wrote them by e-mail. Unfortunately, the response was devastating. We presented a high class aniridia training on a silver platter, but unfortunately none of these doctors accepted and we had to cancel everything. This was almost the end of our association, so I thought at that time. It took time to recover but then we started again and with new courage.
We will try again to plan new congresses to win young doctors with the same spirit as our Prof. Käsmann Kellner or Dr. Arne Viestenz for us. This is our goal number one.
Now the team of AWS Aniridie Wagr e.V. has expanded in the middle of the year 2021, as the Association has also grown strongly. Our membership currently amounts to 140 people from all over the German speaking countries. The Association was restructured and divided into working groups. 140 members it’s a lot of families and each one has their own problems. So, we want to help with all we have on knowledge and information. It takes time.
The AWS Aniridie Wagr e.V. held for the first time a live stream via Youtube, where the new team of the AWS introduced themselves and the goals of the association were presented. In addition, the medical advisor of AWS, Prof. Dr. Barbara Käsmann Kellner, gave a presentation about aniridia, what to do and what not to do. Users were able to ask live questions to Mrs. Käsmann Kellner, all of which she answered. The topic of inclusion was also addressed in the live stream. Cute videos of children were shown, that explained Aniridia in a child-friendly way. The stream was very successful and new members signed up as a result.
The AWS team meets regularly every 2 weeks for online meetings to realize the goals they have set for themselves. It is currently working on a handbook for affected persons, which is to be completed in end-2022. Likewise, the basic framework for a children’s book has been created, which is still to be professionally illustrated.
A very big success was the establishment of a Signal group for our members, in which people can exchange their experience undisturbed and ask questions. This is used very actively and is an enrichment for all.
In July our first big aniridia meeting will take place after Corona. We are looking forward to it very much. We do not give up hope that what we are doing is not in vain.
our ambitions are easy to understand. Like many of you, it is the self-affected and the parents of affected children who help to change something. not only for themselves but for all those who are yet to come and who themselves have questions and challenges in life like we all do. Together we are strong.
After the war in Ukraine, we received several requests from refugees, whom we were able to place successfully with the help of Mrs. Käsmann in Homburg in the Aniridia Center. We helped with official matters, but that should be a matter of course everywhere. We all thought that nothing worse could happen after Corona. Nevertheless, we try to carry on as normal as possible, despite the fears for the future that everyone has now.
So, I say to myself: miracles only happen when you give more energy to your dreams than to your fears. My motto is not to run after any goal, but to try something really feasible. It takes away the oppressive heaviness of the subject and gives us hope for better times.
Best regards to all our foreign colleagues