Thursday, February 16, 2012

2012... A paradigm-shifting year

"2012 - A paradigm-shifting year....." I like the sounds of that! Below is a great article where two Rett moms (one being the Executive Director of Rett Syndrome Research Trust UK) discuss the science, the reversal, and all the reasons we have reason to be hopeful. In plain English to boot!


  1. I wanted to get a hold of you can you fb me at
    michaelle custer zavoda or can you email me at
    My daughter is 3.5 and is just getting testing for the foxg1. I have always thought she had retts since 8 months old and have been following this disease ever since. I see a cure is coming but want to know if foxg1 cure is coming. I really want to stay connected with you.

  2. Hi! I'll send you a private message so we can talk, but I just wanted to comment on the cure for FOXG1 vs. cure for Typical Rett. I asked the same question to the researchers at Children's Hospital Boston who are working on the Clinical Trials of the drug IGF-1 (potential treatment for Rett Syndrome). It was basically explained to me that so many advancements are being made with the science in so many different directions that we need to be looking at everything being learned as a "proof of principle". Meaning what works for one, may work for another since a variety of mutations present with similar symptoms. Some studies are looking at ways to treat the symptoms, some at improving the way the synapses are firing in the brain and some are looking at actual gene therapy. Not all the advancements are dependent on a mutation of the MECP2 gene. I was reassured that all the science happening is certainly something we can be excited about for our FOXG1 children too. I actually couldn't find you on facebook, but if see me, friend me! Laura Lewis (Donovan). There is a group of FOXG1 parents on Facebook. There's not many of us, but we are there! Good luck with everything. Thanks for your message, I look forward to learning more about your daughter : )