February 28, 2011

Rare Disease Day 2011

Bertrand says that we should all spread awareness about the impact of rare disease!

Today, our family wore jeans and denim pins in support of Rare Disease Day. Bertrand made a big splash at preschool wearing his "jeans for genes" proudly! Across the globe there were fantastic events spreading awareness about the 250 million people affected by a rare disease.

There are currently just over 7,000 rare diseases identified, affecting 30 million people in the US alone. Although these numbers are staggering, what is of even greater concern is that approximately 75% of those affected are children, making this disease category one of the most deadly and debilitating for our country’s children--like Bertrand.

Next year, I would love to hold an event at Bertrand's school much like the inspiring one at Vanderburg Elementary! Anyone crazy enough to help me? :)


  1. Lovely post and I can already see your event next year! You are a great and creative organizer! Loved Bertrand's pictures: very concentrated on his reading! Love you all!!!!!!! Titi Lili