How is Charlie?

Charlie struggles to complete many of the daily tasks we take for granted, but he is making great progress through intensive therapy. Many MECP2 patients begin to see serious symptoms in early childhood. These symptoms include severe seizures, intellectual disabilities, a weakened immune system, recurrent respiratory infections, and loss of ability to walk or talk. We are thankful that Charlie has not been plagued by the most serious medical symptoms that can come with this disorder, and we are working to help him overcome the developmental issues he faces.

Tell me more about the research.

MECP2 research is groundbreaking and gives us hope for Charlie! Thanks to Dr. Zoghbi and her team, there is a clear path to human clinical trials, hopefully very soon. You can read more about specific research, including study results and academic papers, on our Research Page.

We have the chance of a lifetime!
Charlie's MECP2 Duplication Syndrome was diagnosed early, enabling us to raise funds for further research that will change Charlie's life and the lives of other children with this disorder forever. Donate to help us find the cure, or contact us for more information. Then follow us on Facebook & Instagram to see Charlie's amazing progress!


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Change4Charlie MECP2 Duplication Syndrome Advocacy & Fundraising