Sunday, February 27, 2011

February 28 - Jeans for Genes Day

When I was growing up, the school that I went to participated in the annual "Jeans for Genes" day. I had no idea what it was about at the time - everyone wore denim and had to pay $2. It was some sort of fundraiser for something to do with genes, but I wasn't exactly sure what or why. But I didn't really care since it was a good excuse to be out of school uniform! (I went to a school which was very strict on uniforms. It wasn't a "dress code", it was an actual uniform. A plaid dress with a little tab tie and all).

Turns out that this fundraiser is still going on 20 years later, renamed as "Rare Disease Day: Wear that you Care" and it is a fundraiser for over 7,000 rare diseases such as Diastrophic Dysplasia which affect 250 million people, mainly children, around the world. Why mainly children? Because many of these rare diseases have life expectancies of only twenty years. Or ten. Or five. Or not even one year. We are so fortunate that Maddy's life expectancy should not be affected by her rare disease.

Rare Disease day is coming up on Monday 28th of February, so be sure to sport your denim! And if you can, you can make a donation to help research and cure some of these rare diseases.

Visit The Global Genes Project for more information on Rare Disease Day.

To make a tax deductible donation, click on your appropriate country: Australia, USA, Canada, Hong Kong - or to find your own country, search for it here.

In future years, I'd love to organise a group for World Rare Day - maybe at the girls' school, or at Bernard's work or something like that. This year I liked the idea, but I didn't have the motivation to put wheels on it. Ah well, there's always next year :)

1 comment:

  1. Hello! I saw your message on the blog of Maria Eduarda, yes she has diastrophic dysplasia and met some other kids here in Brazil that also has this genetic malformations, we are happy for your contact. Madeline is a very beautiful, and everything will be alright. Every day is a discovery. Good luck, let us talking, kissing.