Why I’m doing Jeans for Genes’ Bake it Blue

I’ve signed up to do Bake it Blue. This raises money for Children’s Medical Research Institute and helps save more kids’ lives. Can you help by sharing this message with the people you know and asking them to donate too?

Here's just one story explaining why this cause is so important:

My son Joel was born with a rare genetic disorder called AHC.   This disorder affects 1 in 1 million children.  Joel was the 5th kid diagnosed in Australia at the time.    Joels disorder affects his breathing, movement requiring a wheelchair and other mobility aides, causes painful dystonia, cognitive and mental health issues and seizures.  Joel has been intubated as a child and spent countless nights in the hospital both in our hometown and Sydney Childrens.  So far, there is no cure not effective treatment for AHC, though they are working very hard towards it with genome sequencing and gene replacement therapy trials in mouse models. 

So, the research you and I support today may one day help someone we know, someone in our family.

There’s lots of work to do, but there is also lots of hope.

Join me. Share this message. Donate. Thank You!