I’m not sure where my writer’s block is coming from, it’s incredibly frustrating to have so much to say and no way to get it from my brain to the screen. Perhaps more wine will help? Or perhaps less? HAHA! Ugh.
Anyway… I need something *SHOCKER*, I know.
I would like to ask each and everyone of you to go to the link below and take 30 seconds to fill it out. It will generate a letter to your members of Congress, asking them to keep the current funding, in the NIH, CDC and DoD budgets targeted at fragile X research, in place for another year.
This is the money that funds research towards a cure. Research, by the way, that is showing promise in treating Autism, Alzheimer’s and Parkinson’s. This is the money that keeps the National Fragile X Foundation operating so that when a family, like mine, has their world rocked to the core…there is someone to help them figure out how to find a new normal.
I’d like you to take one minute and look at your child. Imagine for a moment that he or she has Fragile X Syndrome. Imagine for one moment that you DID THAT to him or her. Imagine for one moment that there is absolutely NOTHING you can do to fix it. You can fight the school and insurance company for therapy and it will help, it will help a lot, but it won’t FIX IT. Nothing will fix it.
Now, tell me why, when we are getting close to medications that can FIX IT, you won’t send a letter telling them not to stop short of the goal line?
UPDATE! As of 11am we have…2,220 letters total (That’s up 175 letters from 9 AM!!) 82 Senators and 255 Reps (almost 60% of House) have heard from us. We need more letters especially in ID, LA, HI, UT, VT, MT (we only have 1 from each) and DE, AK, NV (we have 0 from these states).
Please write a letter even if your state isn’t listed here…we’re still missing some Senators and Reps from other states!
If you don’t know what to write for the Personal Statement you can say “I have friends who are affected by fragile X syndrome.“