When my oldest daughter Claire was first diagnosed with Rett Syndrome (RTT) in October of 2007, we were told that nothing could really be done for her. The doctors said that because of a very rare and little understood mutation to a very specific gene Claire would never walk or talk. An early death for unexplained reasons is also quite common for girls who live with RTT.
"¨A lot has happened since that day. Families around the world who are affected by RTT have rallied together, holding fundraisers of every different sort in support of RTT research. This research has changed the outlook for the future of living a life with RTT. Following exciting research results, a trial of the drug IGF-1 was expanded to see how it affects girls with Rett Syndrome.
"¨Here is where we need your help. Phase 2 of this trial requires 30 girls living with RTT to participate. All 30 girls must fit within specific criteria, creating an even smaller pool of potential participants. Sadly, the trial currently has only half of the 30 girls that it needs in order to be completed.
Participation in phase 2 of the trial involves seven trips to Boston, at least 43 nights in hotels, and is averaging about $15,000 per family. There are many families out there that wish that they could participate but do not have the means."¨
The goal of this page is to bridge the financial gap for the families who want to join the study but currently are unable. If we reach our funding goal of $75,000, we can award $5,000 grants to 15 more families and fill up the study group. Having 30 girls enroll is the only way these fabulous researchers can collect enough data to learn more about RTT. Please help move us toward a future where Rett Syndrome is known as a treatable disorder by making a donation today!
To follow our daughters Claire's journey as we participate in the trial, follow at http://rettland.com
If you would like to learn more about the trial you can visit: http://www.clinicaltrials.gov/ct2/show/NCT01777542?term=igf+1&recr=Open&rank=9
If you would like to learn more about Rett Syndrome you can visit:
If you are interested in receive an award from this fund, please click the 'Contact' button at the top of this screen to send me a message.
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