Category Archives: Dr. Walter Kaufmann

ASCEND 2022!

Posted on May 11, 2022 by melelllan

After a VERY long hiatus, the annual/biannual Rett syndrome Family Conference came back with a BANG! The backdrop being the incredible, but entirely too large, Gaylord Resort, Nashville. Thank you to IRSF for putting together such a massive and comprehensive … Continue reading →

Posted in Acadia, Anavex, Ascend Rett syndrome conference 2022, boys with Rett syndrome, clinicaltrials.gov, Communication, David Clements, Dr. Helen Leonard, Dr. Walter Kaufmann, FDA, fund-raising for rett syndrome, hope, Huda Zoghbi, Kevin Black, LAVENDER TRIAL, Raising a Hand, Rett Research, rettsyndrome.org, Telethon for Kids, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III, Uncategorized | Tagged , , , , , , , , , , , , , , , , , | Leave a comment

Rett Syndrome is Such a Trial… #1 Anavex 2-73

Posted on April 12, 2019 by melelllan

…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 , , , , , , , , , , | 3 Comments

Hold the Presses-Trofinetide in the News!

Posted on March 27, 2019 by melelllan

The first publication of the Pediatric Trofinetide trial has hit the proverbial newsstand! Neurology.org has published “Double-blind, randomized, placebo-controlled study of troļ¬netide in pediatric Rett syndrome” ahead of print. So, it’s hotter than “hot off the press.” So, quick cut … Continue reading →

Posted in Acadia, anxiety in Rett syndrome, Ataxia, Breathing issues in Rett syndrome, Communication, cure, Dr. Walter Kaufmann, hand clasping in Rett syndrome, Intrepid 2566, margaret brimble, Neuren Pharmaceuticals, Neurology.org, NNZ-2566, Orpan Drug Status, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, screaming in rett syndrome, seizures in Rett syndrome, Texas Children's Hospital, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , | Leave a comment

Let’s Break it Down-4

Posted on April 1, 2017 by melelllan

Well! If the last section was a stormy sea of up and down graphs and whirlpools of numbers, I think we’re in for some smoother sailing now! In the last post, three of the five measurements used in this trial … Continue reading →

Posted in anxiety in Rett syndrome, Communication, cure, Dr. Walter Kaufmann, hand clasping in Rett syndrome, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial | Tagged , , , , , | Leave a comment

And Tomorrow it Begins

Posted on September 30, 2016 by melelllan

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

50 Years of Rett syndrome

Posted on September 17, 2016 by melelllan

What I wouldn’t give to be in Vienna right now. You guys in Europe are SO lucky! Today is the last day of the RTT 50.1 conference. What is that? A milestone. 50 years since Dr. Andreas Rett published the … Continue reading →

Posted in cure, Dr. Walter Kaufmann, hope, Rett Research, Rett Syndrome, rettsyndrome.org | Tagged , , , , , , , , , , , | 2 Comments

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

Posted on August 2, 2016 by melelllan

Dr. Kaufmann’s presentation,”Behavior Issues and Management,” wasĀ  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 melelllan

Dr. Kaufmann (who will be getting a few posts here) gave a presentation about the behavioral issuesĀ 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