I've recently become involved with a department as part of Sir Charles Gairdner Hospital in Western Australia and their Inherited Retinal Diseases Register and DNA bank. The aim of this organisation is to be able to study the mutations to the gene that is causing Stargardt's. So I decided I would consider donating my DNA so hopefully somebody can find a treatment!
I'm still yet to consider the ethics and legality of this, and my main concern was who would have access to my DNA - I definately don't want insurance companies or the police accessing my very, VERY personal information I don't even know about myself! Once I recieve the kit and read through the organization's information I can make my judgement but it is definately looking promising!
If anybody else want sto participate here are the contact details for the department responsible:
Department of Medical Technology & Physics
Inherited Retinal Disease Register & DNA Bank
Sir Charles Gairdner Hospital
Nedlands, WA 6009
Ph: (08) 93462408
I have been informaed that so far there are only 115 people in Australia registered on the database who have Stargardt's! This makes me feel kind of special and unique!