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Category Archives: sarizotan
Even Still, We Must Reach for the STARS
Hyperventilation, daytime apnea, breath-holding– whatever name you call it by, it’s a horrific breathing pattern that severely impacts the quality of life of many of our children and their families. In 2016, Newron Pharmaceuticals undertook the STARS trial, an international … Continue reading
Posted in clinicaltrials.gov, Newron, orphan drug designation, rettsyndrome.org, sarizotan, Trail to a Texas Trial, Uncategorized
Tagged BioRadioTM, BusinessWire, daytime apnea in Rett syndrome, Dennis Dionne, Newron Pharmaceuticals, Rett syndrome International Burdenof Illness Survey, STARS Trial
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A Challenge Accepted! ;)
It hasn’t happened before. I was given a MISSION, if I chose to accept it, to explain some new developments in regards to Sarizotan (Newron) and Anavex 2-73 (Anavex) receiving FDA Rare Pediatric Disease Designation: “Mel Lancaster have you posted … Continue reading
Posted in Acadia, Anavex, Anavex 2-73, FDA, Neuren, Neuren Pharmaceuticals, Newron, Orpan Drug Status, sarizotan, Trail to a Texas Trial, Trofinetide
Tagged Anavex, Anavex 2-73, Newron, Office of Orphan Products Development, Priority Review Voucher, Rare Pediatric Disease (RPD) Designation Program, Rare Pediatric Disease Designation, sarizotan
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A Day with Acadia- Part 1: Awareness
This is my last post of Rett syndrome Awareness month. I had hoped to do more, but Rett syndrome made sure a good amount of awareness was happening right at home, but this was going to be the last either … Continue reading
Posted in Acadia, Anavex, Anavex 2-73, Communication, Dame Margaret Brimble, fund-raising for rett syndrome, gp2c, hope, ketamine, kyphosis, Neuren, Neuren Pharmaceuticals, Newron, NNZ-2566, NNZ-2566 trial, Remarkable Rett-a podcast series, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, RSRT, sarizotan, service dog, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III
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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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Sarizotan Trial #4: Almost There!!
As we head into the new year, I just wanted to give you all an update on the Sarizotan trial- STARS- for daytime apnea (breath-holding). I’m pleased to announce that Newron only needs 8 (or less) more participants to complete … Continue reading
Posted in Breathing issues in Rett syndrome, cure, hope, Newron, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettland.org, rettsyndrome.org, sarizotan, Trail to a Texas Trial
Tagged breath-holding in Rett syndrome, breathing, breathing abnormalities, breathing abnormalities in Rett syndrome, daytime apnea, Dr. Helen Leonard, Dr. Stephen Graham, Rett syndrome.org, rettland.org, sarizotan, Sarizotan trial, STARS Trial
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Sarizotan Trial #2 A Bit of Background
So, I was going to talk about how Sarizotan is supposed to work to help with daytime apnea this week, but I thought I’d give a bit of background on it instead. 🙂 Back in 2002-2003, Sarizotan was used in … Continue reading
Posted in anxiety in Rett syndrome, Breathing issues in Rett syndrome, Newron, Orpan Drug Status, orphan drug designation, Rett Research, Rett Syndrome, rettland.org, sarizotan, screaming in rett syndrome, Trail to a Texas Trial, Uncategorized
Tagged apnea in rett syndrome, breathing abnormalities, daytime apnea, daytime apnea in Rett syndrome, dyskenesia, EMA, FDA, Newron, orphan drug status, Parkinson's, sarizotan, Sarizotan trial
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The Sarizotan Trial #1: Breathing-It’s Own Sort of Agony
We all know how much we wait for breathing- when our child has just been born, the seconds are eternities, agony, as we wait for that first cry. We all know the fear of that first night they sleep through; … Continue reading
Posted in Breathing issues in Rett syndrome, Newron, Rett Research, Rett Syndrome, rettsyndrome.org, sarizotan, Trail to a Texas Trial, Uncategorized
Tagged breathing abnormalities, breathing abnormalities in Rett syndrome, Newron, research, Rett syndrome clinical trials, Rett syndrome research, Rett Syndrome Symptoms, rett syndrome treatment, sarizotan, scoliosis, STARS Trial
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What do Halloween and Rett syndrome have in Common? Superheroes.
Today is the last day of October. Another year gone by from one Awareness Month to the next and still no treatment. But this is not a humdrum post BECAUSE treatment is now within sight. Each year in October superhero … Continue reading
Posted in Anavex, Anavex 2-73, boys with Rett syndrome, cure, fund-raising for rett syndrome, Neuren Pharmaceuticals, Newron, Rett Research, Rett Syndrome, Rett syndrome Awareness, sarizotan, Trofinetide, Trofinetide Phase III, Uncategorized
Tagged Anavex, Anavex 2-73, Halloween, hope, Neuren Pharmaceuticals, Newron, Phase III trofinetide, Rett Research, Rett syndrome, Rett syndrome Awareness, Rett syndrome research, superheroes, Trofinetide
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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 #rettsyndromeawareness, autism, Cure Rett Syndrome, iep, Neuren Pharmaceuticals, Newron, research, rett syndrome awareness day, Rettsyndrome.org, sarizotan, special needs parents, TBI, Trofinetide
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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
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