I’ve never pretended to be a sane person, that in itself would be ludicrous. However, when I found out last September that the two clinical trials for Rett Syndrome were stalling due to enrollment I went bat shit crazy. I lost a lot of sleep. That is ultimately what led us to enrolling in the IGF-1 trial. I assumed that there were 30 families closer to Boston that could enroll but I was wrong. So we went to Boston.
I also started the Rettland Foundation because I never want to loose that much sleep again due to research for Rett syndrome needing people that it doesn’t have. For 6 years I had been fundraising for that research. The money that pays for those trials was hard to come by but we all pulled together and made it happen and that was a miracle. Really. It is insane how quickly the science around RTT is advancing, which is good because we needed it yesterday!
This October I am focusing not on how horrible RTT is but how we can all make it better. Rettland Foundation has joined with curerett.org, rettsyndrome.org and the Ontario Rett Syndrome Association and we are asking people: What would you give? Would you give up a manicure once a month and set up a recurring donation for that amount? Would you give up coffee for a week and donate that amount?
I can tell you what I am giving, everything I’ve got to go back and forth to Boston. I will do anything to change the world to one where RTT is treatable.
Just to clarify, when I say I’d do anything what I mean is I’m even willing to shave off all of my beautiful blonde hair, but only if it makes a difference. The goal is to raise $50,000 for Rettland Foundation by the end of October. If that happens, along with my friends Kori and Erica I will gladly shave my head for Rett Syndrome. I need a cure for Claire more than my hair. I need trials that are fully enrolled so the research can move forward quickly. If you would like to help me reach this goal you can go to rettland.org/donate If you’d rather donate to research great! curerett.org and rettsyndrome.org are doing fabulous things. Without them funding research we wouldn’t have families to help.