When Grace was first diagnosed, I started watching videos online of other girls with Rett Syndrome. Some videos were scary. All of them made me cry. But a few videos in particular confused me and these were the ones where people were talking about there being a cure for Rett Syndrome on the way. I thought “poor suckers” and assumed it was a scam or some scary on the fringe alternative medicine experiments. Then, I met Rachael Bloom one of the founders of the Rett Syndrome Research Trust UK and she sat me down and explained in detail all of the science going into finding a cure.
Through a series of events I met more and more Rett parents who are ‘in the know’ about recent advances in Rett research. I’ve spent weeks in the home of one of the other founders, Kori Coates, who has told me even more about the research and I now stand in a place of true hope and faith just like the parents on those YouTube videos I saw when I first started searching.
You see, it’s only been 12 years since the gene for RS was discovered. Before that, RS had a name but no known cause. Now, some of the best brains in medicine are researching into a cure funded by the RSRT and the RSRT UK. 99% of all the funds raised by these charities goes directly to the labs researching for the cure.
Here are the most exciting things to me:
- In 2007, Adrian Bird reversed Rett in mice models
- Jonathan Kipnis is currently looking to see if bone marrow treatment will work for RS like it’s already cured other diseases. This is a very hopeful hypothesis and many believe this is where our cure will come from.
So if you’re one of those parents who hasn’t allowed themselves to believe that there is hope for a cure, breathe a big sigh of relief because there WILL be a cure in Grace’s lifetime.