“Hi Everyone! As you all know, we’re working really hard behind the scenes to improve the treatments and services for everyone with E.D.S. in Ireland. I would be obliged if you could take part in my ANONYMOUS survey about living with the condition in Ireland. It will take between 5 and 10 minutes depending on how much information you want to give. I am going to use the statistics we gather to help push the government and medical organisations etc into action for all of us. If you are a parent of a child with E.D.S. you can complete the survey on their behalf, and for example if you have 2 children plus yourself affected, if you complete it three times then we will have official statistics for the three of you to help us fight our case. Thank you to everyone that acted as my guinea pig getting it up and running.
This is the FIRST time statistics about E.D.S. has ever been officially gathered in Ireland. Your contribution will help us to fight tooth and nail for you. I hope you all can spare 10 minutes of your day for this. THANK YOU xxx