By Nico de Milliano, Chairman of the Advisory Board of Stichting Ushersyndroom [Dutch Usher syndrome Foundation]
Stichting Ushersyndroom will soon reach a wonderful milestone: the first million will be brought in even before the end of the year. And we want to celebrate this!
What is Usher Syndrome?
Usher Syndrome is a rare hereditary disorder. The children suffering from this disorder are born deaf or hard of hearing and-they will also experience a progressive loss of eyesight. Eventually, people suffering from Usher Syndrome become both deaf and blind. About 1000 people in Netherlands suffer from this syndrome.
What is Stichting Ushersyndroom?
An active group of people who are suffering from Usher Syndrome themselves or who are partner, parent or friend of someone suffering from Usher Syndrome. Stichting Ushersyndroom has existed for about six years and its mission has been formulated as: ‘A treatment for Usher Syndrome in 2025’.
In order to reach this goal, the Usher Syndrome Foundation is committed to making the syndrome more widely known, to bringing people suffering from Usher Syndrome together and to being active in fundraising.
The foundation closely works together with similar organisations abroad, such as the US, Ireland and the UK and it has good contacts with research centres all over the world.
What is money needed for?
Most of all, money is needed to finance research. As this is about a rare disorder, governments and businesses want to spend no or little money on research.
Usher Syndrome is a genetic disorder. In recent years, large steps have been taken in research that are to lead to treatment methods. The mission of the foundation is realistic, but a lot of money will be required in the coming years.
What are we going to do with one million euros?
Stichting Ushersyndroom is really happy that we have been able to collect such a large amount of money within a few years. Thanks and honour to all those who, with large and small campaigns, have achieved this.
The money will be used for various research projects in the Netherlands and abroad. We will mention a few:
- A study into the natural development by the Expert Centre for Usher Syndrome in Radboudumc Nijmegen, the Netherlands, will receive an amount of € 257,000 in the period 2019-2024;
- We make a contribution of € 10,000 to setting up a database for Usher-III patients in the US;
- We co-finance a study into sleeping problems experienced by people suffering from Usher Syndrome.
The work has not been done yet!!
Research is a long-winded matter. Therefore more money will be needed in the years to come.
Therefore, the Stichting Ushersyndroom will keep working really hard to fulfil its mission.
Let’s go for two million!