Catalina Crainic, President ‘Asociatia Childrens Joy’, Romania
A fundraiser for genetic testing of 12 people with dystonia by The Children’s Joy Association (adults and children).
Diagnosis and classification of dystonia is of great importance for the proper management of prognostic information and genetic counselling of patients. The cost of a test is $250. Genetic testing must be done in the USA because in Romania the only tests available are those that identify dystonia in general, in the USA individual genes can be identified.
For the first phase of our program we would like to help 12 people with dystonia to be able to undertake complex genetic testing.
Diagnosis and classification of dystonia is of great importance for the proper management of prognostic information and genetic counselling of patients. The cost of a test is $250. Genetic testing must be done in the USA because in Romania the only tests available are those that identify dystonia in general, in the USA individual genes can be identified.
For the first phase of our program we would like to help 12 people with dystonia to be able to undertake complex genetic testing.
Also the founder of the association Sabina Gall (DBS Patient) and Catalina Crainic, President of the association and a cervical dystonia patient, make decorative objects using various techniques and sell them for a donation to the cause. Catalina and Sabina created a Facebook page called ‘One Thing’ which is a platform for selling the decorative objects.
So far during February and March 2021 we have raised €2000!
Fundraising will continue until it can complete what we set out to do, to achieve our goal.
Patients need to be informed and given a correct diagnosis, as it is normal to want to know more about the disease they are struggling with.
At the end of the fundraising we will launch an information and awareness campaign which will emphasize the importance of genetic testing. Patients will be better informed and educated in this regard with the help of specialists in the field who will be involved.
We are considering a good start to raise awareness and help both patients and specialists know as much as possible about dystonia. A small step which we hope will give new perspectives and opportunities to look at dystonia.
Catalina Crainic, President Asociatia Childrens Joy, Romania
and Board Member Dystonia Europe
