Monthly Archives: April 2015

Our French Cast (aka French Rett Families) Need Us!

Posted on April 29, 2015 by melelllan

Can’t wait to see this premier!! Thanks to the French Rett Syndrome Association for the best preview poster ever! The French Rett Syndrome Association needs our help. They have an awesome proposal and are in the running to receive a hefty donation, … Continue reading →

Posted in Uncategorized | Tagged , , | 38 Comments

Newsworthy News!

Posted on April 28, 2015 by melelllan

Today, like many other Rett parents, I got an e-mail from Neuren in regards to their Chairman’s Address to Stockholders. It was chock full of hopeful expectations. Of particular note: “Finally, I would like to make some remarks in relation … Continue reading →

Posted in Ann Romney Center for Neurological Diseases, Brigham and Women's, cure, Neuren Pharmaceuticals, NNZ-2566, Rett Research, Rett Syndrome, rettland.org, TBI, Trofinetide | Tagged , , , , , , , , , , | 1 Comment

Go Team Rett!!

Posted on April 19, 2015 by melelllan

Tomorrow, eight amazing people are running the Boston Marathon for our girls and boys. I had the real pleasure of getting to meet some of them yesterday. A small get together at the Lir, in Boston, provided a nice environment to … Continue reading →

Posted in Boston Marathon, fund-raising for rett syndrome, Rett Syndrome | Tagged , , , , , , | Leave a comment

Behavior IS Communication!

Posted on April 2, 2015 by melelllan

I cried reading this. I wish I could hand it to everyone who has told me “behavior is subjective, it doesn’t count.” Why is it, I wonder, that people understand babies’ behaviors and toddlers’ who haven’t learned to speak yet; … Continue reading →

Posted in Uncategorized | 2 Comments