In honor of my daughter Mia who suffers from CDKL5, I'm raising money for the protein replacement therapy project.  I believe this is one of the few projects that will offer a treatment option for Mia in her lifetime.  Below is an article on the project as well as a fact sheet.  Thanks for your support!  

The Board of Trustees of CDKL5 UK are proud to announce that we have awarded our first research grant to support Protein Replacement Therapy. This project is ongoing and is being conducted at the Department of Biomedical and Neuromotor Sciences in Bologna, Italy, the principal investigator is Dr Elisabetta Ciani.  Protein Replacement Therapy is an exciting project which is at the cutting edge of research, and is currently being funded by our sister organisation in Europe, the CDKL5 Associazione di Volontariato in Italy, who this week have forwarded 30,000 Euros. CDKL5 UK’s grant is for 20,000 Euros, we are directly funding the project, and this has been made possible as a consequence of our successful fundraising efforts to-date, along with significant donations received from Rett Syndrome & CDKL5 Ireland, and a large Corporate donation which was received in honour of a family living with a child with CDKL5 in Germany. Dr Ciani writes “now we are at the beginning and though we have promising results there is still much that must be done. Thus, the financial support of the Foundation will help us to go on with this rather expensive study”. In order to expedite this research, CDKL5 UK will soon be announcing innovative ways in which you can support this initiative, which we hope will unite our research efforts globally. More information about the research project will be released in a Factsheet in the next couple days and we hope this will answer any questions you might have.

http://www.cdkl5uk.org/assets/UnlockCDKL5/protein-replacement-therapy-factsheet2.pdf