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Category Archives: rettland.org
Claire
We end this shortened series with Part VII; Rett syndrome gets in the way of so much, even when we really want to accomplish something. I’m hoping that those who were unable to participate get relief soon. And so, here … Continue reading
Acadia Prepares for the Triple Crown
It’s been a long haul for all of us waiting on this final phase of Trofinetide trials. It’s like waiting through the Triple Crown… First, the Kentucky Derby! Such a big deal, it’s crazy the hoopla that surrounds it. Then, … Continue reading
Posted in Acadia, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rettland Foundation, rettland.org, rettsyndrome.org, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Trofinetide Phase III
Tagged Acadia Phamaceuticals, lavender and lilac, Rett syndrome, Triple crown, Trofinetide Phase III
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Rett Syndrome is Such a Trial… #2 Ketamine
Many parents can attest to the fact that after a procedure requiring anesthesia our children have a decrease in Rett related symptoms. For Katelin, this was a drastic decrease in behavioral issues. My other children would often say… Can we … Continue reading
Posted in Breathing issues in Rett syndrome, FDA, ketamine, Rett Research, Rett Syndrome, Rettland Foundation, rettland.org, RSRT, Trail to a Texas Trial, Uncategorized
Tagged clinicaltrials.gov, Dr.Jana Von Hehn, FDA, ketamine, Rett syndrome clinical trials, Rett syndrome research, Rett Syndrome Research Trust, Rett Syndrome Symptoms, Rettland Foundation, RSRT
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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
In the Spotlight!- Colleen English
Every once-in-awhile you meet someone just destined to change your world. One of those people is Colleen. In the years that I’ve known her, her great, big heart has gone from figuring out to provide gift cards to trial families … Continue reading
Posted in Anavex 2-73, IgF-1 trial, Neuren Pharmaceuticals, Newron, Rett Research, Rett Syndrome, Rett syndrome Awareness, Rettland Foundation, rettland.org, sarizotan, seizures in Rett syndrome, Trail to a Texas Trial, Uncategorized
Tagged fund raising, gp2c, research, Rett syndrome research, Rett Syndrome Research Trust, Rettland Foundation, rettland.org, Rettsyndrome.org, sisters
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International Women’s Day
I’ve had some great female role models over the years and I have a pretty long memory. The first woman I remember, even before my own grandparents, was Grandma Watson, we lived upstairs from her when I was just a … Continue reading
Posted in chan zuckerberg initiative, huda zoghbi, Huda Zoghbi, International Women's Day, margaret brimble, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettland.org, rettsyndrome.org, RSRT, Trail to a Texas Trial, Uncategorized
Tagged Colleen English, Dame Margaret Brimble, Dr. Huda Zoghbi, eunice kennedy shriver, International Women's Day, Jennifer Endres, Kathy Hunter, Margret Brimble, Maureen Woodcock, Monica Coenraads, Paige Nues, Rett syndrome, Rett Syndrome Research Trust, rettland.org, Rettsyndrome.org
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The Next Steps Up the Mountain
Neuren Pharmaceuticals and Acadia have announced more details about the upcoming Phase III trial. Read about them HERE. Two very important blurbs stick out: “The Phase 3 study will be followed by an open label extension study in which all … Continue reading
Up To The Mountain-again.
I struggled to come up with a title for this post and I struggled in deciding whether to write it or not. But, I challenged myself to be honest with both myself and others when I began this blog and … Continue reading
All is Not Quiet on the Trofinetide Front #2; A Balancing Act
* Warning* Looooong post! If you aren’t interested in financial aspects and just want an update on logistics that have affected the timeline, skip to the second half- there’s also a link to a new update from Acadia, the pharmaceutical … Continue reading
Posted in Acadia, cure, FDA, Neuren Pharmaceuticals, Orpan Drug Status, orphan drug designation, Rett Research, Rett Syndrome, rettland.org, rettsyndrome.org, TBI, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Trofinetide Phase III
Tagged Acadia Phamaceuticals, Australia, Dr. Richard Treagus, fast track status, FDA, Fragile X, Hotcopper, Intrepid 2566, morgans financial limited, Neuren Pharmaceuticals, orphan drug designation, Pediatric voucher, Phase III trofinetide, Pitt street Research, Rett Research, Rett syndrome, Rett syndrome clinical trials, Rett syndrome.org, rettland.org, Trofinetide Pediatric trial
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All is Not Quiet on the Trofinetide Front #1 A Chess Game
It’s been very quiet in the public eye in regard to Trofinetide. We all are in a holding pattern as we wait for Phase III to begin, but BEHIND the scenes things are progressing strategically and clearly, like a chess … Continue reading
Posted in Acadia, anxiety in Rett syndrome, Ataxia, boys with Rett syndrome, breakthrough therapy, Communication, cure, FDA, Fragile X, hope, margaret brimble, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, rettland.org, rettsyndrome.org, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Trofinetide Phase III, Trofinitide, Uncategorized
Tagged Acadia, adult Trofinetide trial, boys with Rett syndrome, breakthrough therapy, Cure Rett Syndrome, Dame Margaret Brimble, FDA, fighting rett syndrome, Hope in rett syndrome, Margret Brimble, Pediatric trials results, Rett Research, Rett syndrome, Rett syndrome clinical trials, rett syndrome cure, Rett syndrome research, rett syndrome treatment, Rett syndrome trials, rettland.org, Rettsyndrome.org, Trofinetide, Trofinetide Pediatric trial
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