Category Archives: Rett syndrome conference 2016

My Heart is in Her Hands

Posted on October 6, 2016 by

                                                                This is an updated post from two years ago.   Fact: Abnormal hand movements. As the disease progresses, children with Rett syndrome typically develop their own particular hand patterns, which may include hand wringing, squeezing, clapping, tapping or rubbing.(Taken from … Continue reading →

Posted in Communication, cure, Education, hope, NNZ-2566 trial, Rett Syndrome, Rett syndrome conference 2016, Trofinetide, Uncategorized | Tagged , , , , , , , , | Leave a comment

A One in a Million Boy

Posted on October 4, 2016 by

  Rett syndrome affects 1:10,000-15,000 females. You hear all kinds of statistics about girls; almost all literature has only the pronouns “she” and “her”.  Even doctors will talk in terms of only girls. Trials are only compiled of girls. But, … Continue reading →

Posted in boys with Rett syndrome, Klinefelter's syndrome, Rett Syndrome, Rett syndrome conference 2016, Trail to a Texas Trial, Uncategorized | Tagged , , , , | 6 Comments

And Tomorrow it Begins

Posted on September 30, 2016 by

Tomorrow starts Rett Syndrome Awareness Month. Needless to say, all around the world parents, researchers, doctors, aides (the lovely ones, like Curry), siblings, grandparents and loved ones are going to bombard their Facebook pages with statistics, symptoms, pictures of purple … Continue reading →

Posted in cure, Dr. Walter Kaufmann, fund-raising for rett syndrome, Neuren Pharmaceuticals, Newron, NNZ-2566 trial, Rett Research, Rett Syndrome, Rett syndrome conference 2016, rettsyndrome.org, sarizotan, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , , , , , | 2 Comments

Conference Post 4-Behavioral Issues…What? Why? and What’s being done.

Posted on August 2, 2016 by

Dr. Kaufmann’s presentation,”Behavior Issues and Management,” was  a must go to for me. In my previous post, I concentrated on how behavioral issues affect the caregivers and family. Now, I’d like to talk about the key points he made in … Continue reading →

Posted in anxiety in Rett syndrome, Communication, Dr. Walter Kaufmann, Education, Rett syndrome conference 2016, Talking, Trail to a Texas Trial | Tagged , , , , , , | 2 Comments

Conference Post 3-It Ain’t all about the Kids.

Posted on July 25, 2016 by

Dr. Kaufmann (who will be getting a few posts here) gave a presentation about the behavioral issues in Rett children and adults. I’m going to do it in two parts. I can’t find the booklet today that gives the title of … Continue reading →

Posted in anxiety in Rett syndrome, Dr. Walter Kaufmann, Rett syndrome conference 2016, Special needs siblings, Trail to a Texas Trial | Tagged , , , , | 1 Comment

Conference Post 2- Raise Your Hand

Posted on July 16, 2016 by

I find it hard to decide what order to do these posts in; what struck me, may not be what struck others. However, I believe I can say we were all struck by Kevin Black. Kevin’s daughter, Cortney, passed away … Continue reading →

Posted in David Clements, Kevin Black, Raising a Hand, Rett syndrome conference 2016, Uncategorized | Tagged , , , , , , , , , | Leave a comment

Conference Post 1-A Family Reunion

Posted on July 10, 2016 by

It’s hard to believe that two weeks have already passed since the Rett syndrome conference took place. I haven’t really had time to reflect on it since Katelin and I have been traveling all that time, but I didn’t want … Continue reading →

Posted in Rett syndrome conference 2016, Uncategorized | 1 Comment