Category Archives: Education

Raise Rett Syndrome Awareness

I’ve had my mind on other things, so somehow this escaped me, but today there is an organized push to raise Rett syndrome awareness, through #rettsyndromeawareness While we do devote the entire month of October to Rett Syndrome Awareness, it … Continue reading

Posted in boys with Rett syndrome, chan zuckerberg initiative, Communication, cure, Education, Fragile X, fund-raising for rett syndrome, Intrepid 2566, Neuren Pharmaceuticals, Newron, Rett Research, rettsyndrome.org, sarizotan, TBI, Trail to a Texas Trial, Trofinetide Pediatric trial | Tagged , , , , , , , , , , , , | Leave a comment

Speechless

In case you are slow to know, there’s a new show out there. One that speaks for US, the families of the speechless. It’s funny! Hey, we have incredibly funny lives at times. It has great lines like….”Other people’s opinions … Continue reading

Posted in Communication, Education, Special needs siblings, Speechless, Trail to a Texas Trial | Tagged , , , , , , , | Leave a comment

My Heart is in Her Hands

                                                                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

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

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

One Big Step for a Girl, One Giant Change for a Mom

Yes, it happened. My girl grew up. 22. Where do the years go. Now begins a whole new chapter in our lives. We’ve turned the page of school, of the known and oh, what a cliffhanger. What is to come … Continue reading

Posted in Education, hope, Neuren Pharmaceuticals, Trail to a Texas Trial, Uncategorized | Tagged , , , , | 1 Comment

B is for Body Apps-Part III

  Yesterday, I highlighted an app that fell short; today, I’m highlighting my favorite “body app”, The Human Body by DK. This app is amazing. It cost $7.99 and is worth every penny. This is an app that can “grow” … Continue reading

Posted in Apps, Education, Human body | Tagged , , | Leave a comment

B is for Body Apps-Part II

Today, I’m going to highlight an app that should be pretty fantastic, but falls short on so many levels. I’m pretty sure I paid for it, which makes it even worse. Body Organs by nth Fusion LLC, at first glance, … Continue reading

Posted in Apps, Education, Human body | Tagged , , , , | Leave a comment