Thursday, April 9, 2009

I won! I won!


no time to talk, but I got this email today telling me that my "PKU and Us" video won first prize in the Rare Disease Day Video contest (organized by Eurodis, the European organization for rare diseases). If you want to, you can follow the link here.

So what does this mean?

It means Im getting an IPOD touch. But more importantly, it means that my video will be exhibited at the Eurordis Membership Meeting in Athens, May 2008. 

So, who are these people?

The European Organisation for Rare Diseases (EURORDIS) represents more than 300 rare disease organizations in 34 different countries, covering more than 1,000 rare diseases. It is therefore the voice of the 30 million patients affected by rare diseases throughout Europe.

EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe. It is supported by its members and by the French Muscular Dystrophy Association (AFM), the European
Commission and private donors

In other words, Katy's troubles may light a beacon of hope in the search for a cure.  At least, her story will receive attention from people who can make a difference.  Im totally floored and exuberantly thrilled.

ps- the winning video (aka- my glorious face) will be announced in a couple of keep it secret.  hehe