Last week our friend Kori from Cure Rett was so inspired from the rettsyndrome.org annual conference that she pledged to shave her head to raise money for research. Kori put it best when she wrote “Seeing the barely suppressed excitement over the ongoing clinical trials; witnessing the hope and potential for treatments not ‘IF’ but ‘WHEN‘…well…I think it all combined and made me think ‘WHY NOT’.
It got us thinking about the families that are currently participating in the clinical trials. Many of the families in the NNZ-2566 trial relocated to Texas for 40+ days to participate. Families in the IGF-1 study are traveling to Boston 6 times, spending at least 50 nights away from home and reporting an average cost of participating in the trial of $17,500.
These families need our help. Not only are they dealing with the stress of trial protocol, changes in their daughter and constant travel, many of the families are organizing fundraisers between trips to cover the costs.
We are no longer in the “IF“. “WHEN” is actually “NOW” so that left us at the same place as Kori, “WHY NOT“? If we can raise $50,000 by October 31, 2014 Colleen English and Erica Robertson (the president and vice president of Rettland Foundation) will shave their heads along with Kori over in the UK via webcam. The only thing standing between us and treatment is time and money, so WHY NOT!
We need your help. You can help accelerate the current research by supporting families and making it possible for them to participate in clinical trials that will lead to Rett Syndrome being the first treatable disorder of it’s kind.