Many of you came out and walked with us at our 3rd Annual Quest for a Cure! Thank you thank you so much to Annie's A-Team and to everyone who donated. I'm thrilled to tell you that we raised over $32,000 for Rett Research!!! That pushed us to over $100,000 total raised in the past 3 years!
I just want everyone to know how important this is. Rett Syndrome is a rare disease and is fairly "new". We get a very small amount of government funding and that is only for basic research, not the kind of cutting edge research we need to CURE diseases.
Rett research has made amazing advances in the past few years - 1999 the discovery of the gene that causes Rett Syndrome (MECP2), 2007 the REVERSAL of symptoms in a rett mouse model
, 2012 bone marrow transplant arrests sypmptoms of Rett Syndrome.
Researchers believe that Rett Syndrome IS cureable in our children, however, funding research is expensive. The science is there but the funding is not. Money is holding us back from finding our cure and that is not acceptable.
We choose to fundraise for the Rett Syndrome Research Trust
because they are fiscal very lean. 96% of your donation goes directly to research. When you donate you are not paying someones salary or the light bill you are infact making an immediate difference in Annie's life and the lives of the girls pictured below. For that we are truly greatfull!
Congrats MacDonald family and all of the families affected by Rett's syndrome. I am so happy I was able to meet you and Annie. Warm thoughts and prayers your way every day on this journey towards a cure!ReplyDelete
xoxo - Katie Dirksen
Way to go, Annie's A Team!ReplyDelete