the future
ResearchUnfortunately, little research is being done at this time into the incurable muscle disease Emery-Dreifuss and no cure is possible. That is not an option for us as parents.
Upon inquiring with the attending paediatric neurologist whether research is going to take place, it soon became clear that the diagnosis group is too small and the Dutch government will not start a research programme. Knowing this, we as parents have taken matters into our own hands. One of our goals is that research will be started to clarify where things go wrong in the gene that causes Emery-Dreifuss. If that is clear, further research can be started into treatment options. To start such a research programme a great deal of money is needed, at least EUR 500,000. This is a very large amount and in order to achieve this we need a lot of help.
Therefore, your help in the form of events and donations is urgently needed!
whisfull thinking
How do we see the future?
With help from the medical specialists and researchers we hope to start a research programme, with the ultimate goal being treatment and even possibly a cure for this disease.
However, research will first have to be done into the origination of this disease, in order to eventually understand how this disease should be treated and cured.
We think that there may be other studies into other muscle diseases, which we could possibly join. Ultimately, we are stronger together, we can do more and hopefully help more children who have a muscle disease.