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Category Archives: Rett syndrome conference 2016
Rett Syndrome is Such a Trial… #1 Anavex 2-73
…and 2019 looks to change that up a bit- Rett Syndrome, so many trials! According to the most recent GP2C newsletter (GirlPower2Cure)there will be at least 7 trials this year, currently in various stages. This is SO exciting! What does … Continue reading
Posted in Anavex, Anavex 2-73, cure, Dr. Walter Kaufmann, FDA, gp2c, hope, Orpan Drug Status, Rett Research, Rett Syndrome, Rett syndrome conference 2016, Rettland Foundation, rettland.org, rettsyndrome.org, Trail to a Texas Trial, Uncategorized
Tagged Anavex, Anavex 2-73, clinicaltrials.gov, Dr. Walter Kaufmann, FDA, homeostasis in rett syndrome, Rett syndrome clinical trials, Rett syndrome research, Rettland Foundation, Rettsyndrome.org, rettsyndrometrial.com
3 Comments
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
A One in a Million Boy
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
And Tomorrow it Begins
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 Blue Sky Girls, cure, Maya DiMeo, Minnie Driver, Neuren Pharmaceuticals, Newron, purple, research, Rett syndrome Awareness, Speechless, strollathon, Trofinetide
2 Comments
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
Conference Post 3-It Ain’t all about the Kids.
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
Conference Post 2- Raise Your Hand
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