The Time is Now


There is a bit of a conundrum in Rettland. We have all worked hard to raise money for research. Now that there are trials, they aren’t full because participation in them requires more than what most families have to give. I have decided to attempt to bridge this gap for the IGF-1 trial. My reason for picking this one is simple, it’s the one that we got into and I want to see that data transform into help for all of the families affected by Rett Syndrome. A half full study won’t do that. I have heard from too many people 1. We would do it but we can’t afford it. or 2. We would do it but our daughter isn’t eligible. So, I have gone and lost my mind and started a fund. My hope is to get enough money to provide awards to enough families to get the trial full. While living in a world where trials are starting is great, wouldn’t it be better to live in a world where trials have concluded, researchers have learned and we are closer to Rett Syndrome being treatable. That’s my dream. If you would like to help, please visit my page

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