Monthly Archives: August 2016

Full Speed Ahead

If I had tried, I could not have wished for a greater surprise in my inbox after a day of errands, a haircut for Katie (and a donation for Locks of Love all ready to go) and watching my girl … Continue reading

Posted in cure, hope, Neuren Pharmaceuticals, Rett Research, Trofinetide Pediatric trial | Tagged , , , , , | Leave a comment

Gold Medal Kids

Recently, Katelin rode a camel! Mind you, it took longer to get her ON  the camel than the ride was, but she did it. And loved it.  Rett syndrome is so often a race; a race to the hospital, to … Continue reading

Posted in animals, cure, hope, Trail to a Texas Trial, 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