26/10/2023
Inclusive high school activities for all abilities demonstrate that columnist Jackie Babiarz's daughter Cammy is right where she belongs. https://buff.ly/3QuZjzg
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25/10/2023
Acadia Pharmaceuticals created the Rett Sibling Scholarship program, with plans for 10 awards in 2024-2025, to support patients' families. https://buff.ly/495tRyS
18/10/2023
In a boy, 8, with Rett syndrome, teeth grinding was reduced with botulinum toxin injections in the muscles involved in chewing, per a report. https://buff.ly/46BWLou
12/10/2023
Columnist Jackie Babiarz delights in seeing sisters bond as one of her children prepares another's hair and makeup for a school dance. https://buff.ly/3RS7h6J
11/10/2023
Two sets of experiments with a Rett mouse model showed the modified signaling molecule NGF improved survival and normalized behavior. https://buff.ly/3RU6MJm
04/10/2023
The International Rett Syndrome Foundation wants people to go "All In" in supporting patients during Rett syndrome awareness month in October. https://buff.ly/48BmNJX
28/09/2023
Columnist Jackie Babiarz was overjoyed to watch as her daughter, who has Rett syndrome, received her first homecoming proposal. https://buff.ly/46brtVm
27/09/2023
A second woman with Rett syndrome has been treated with the experimental gene therapy TSHA-102 in a Phase 1/2 clinical trial. https://buff.ly/3REaQgM
20/09/2023
The study confirmed findings of some earlier quantitative EEG studies that showed increased theta and decreased alpha power in Rett syndrome. https://buff.ly/461gldM
14/09/2023
Columnist Jackie Babiarz outlines her daughter's developmental regression through her diagnosis of Rett syndrome at 20 months. https://buff.ly/45QhkNL
13/09/2023
Repetitive movements of rubbing the hands together are associated with an increased risk of skin injuries in people with Rett syndrome. https://buff.ly/3ZgKO4K
06/09/2023
In an organoid study, a lack of MECP2 protein stopped precursor nerve cells from transforming into mature neurons in early brain development. https://buff.ly/44L0tKK
31/08/2023
TSHA-102, a Rett syndrome gene therapy now in clinical testing, has been granted fast track status by the U.S. Food and Drug Administration. https://buff.ly/45PVWrn
30/08/2023
TSHA-102, an experimental gene therapy for Rett syndrome, has been granted fast track designation by the U.S. Food and Drug Administration. https://buff.ly/45PVWrn
24/08/2023
After reaching her breaking point as a caregiver, columnist Jacqueline Babiarz takes a much-needed trip to practice some overdue self-care. https://buff.ly/44m94Dx
23/08/2023
Taysha Gene Therapies raised $150 million in a private equity offer, with most money supporting TSHA-102 testing in Rett syndrome patients. https://buff.ly/3KR5yKu
16/08/2023
The first woman treated with the Rett gene therapy TSHA-102 has shown improvements in sleep, breathing, and motor skills, according to Taysha Gene Therapies. https://buff.ly/3OXsYPN
10/08/2023
Columnist Jackie Babiarz typically finds orthopedic visits hard, but a recent one about her daughter's scoliosis prognosis especially hurt. https://buff.ly/3s3lvXs
09/08/2023
Parents of children with Rett syndrome are able to detect disease-specific differences in the sounds made by young babies, a study has found. https://buff.ly/47ttMEb
02/08/2023
Taysha was given the go-ahead to continue testing its Rett gene therapy TSHA-102 in an ongoing trial and soon will be dosing a second patient. https://buff.ly/44UyOrK
27/07/2023
Columnist Jacqueline Babiarz and her family cook dinner for first responders to say "thank you" for the care they provide her teen with Rett. https://buff.ly/44GIeXD
26/07/2023
The International Rett Syndrome Foundation (IRSF) has launched the My Rett Ally app as a free tool to help caregivers streamline tasks. https://buff.ly/44ZiFkv
19/07/2023
Under a new expanded licensing agreement, Acadia Pharmaceuticals is planning to improve patient access to Daybue globally for Rett syndrome. https://buff.ly/3O0WhA7
13/07/2023
Columnist Jackie Babiarz describes the difficulties of raising a teenager with Rett syndrome who remains in an infant development stage. https://buff.ly/43pP2HG
12/07/2023
Iama and scientists from the Sapienza University of Rome are trying to understand if blocking NKCC1 may reduce brain activity in Rett. https://buff.ly/3XL2CV7
05/07/2023
The benefits of Anavex 2-73 observed in a Phase 2 clinical trial were sustained in an open-label extension phase. https://buff.ly/44ybKOK
28/06/2023
Caregivers of Rett syndrome patients seek changes that ease troublesome symptoms, boost child's physical and emotional health. https://buff.ly/42XjPeQ
21/06/2023
A study from China found a quarter of 25 men in the general population had mutations that cause Rett syndrome in a portion of their s***m. https://buff.ly/3XlrQZG
15/06/2023
A new in-ground pool is one of the ways columnist Jackie Babiarz and her family are pulling out the stops to make her daughter's life full. https://buff.ly/43Ftgko
14/06/2023
Anavex has completed dosing all 92 girls with Rett syndrome taking part in a Phase 2/3 clinical trial testing the safety of Anavex 2-73. https://buff.ly/3qMFitq
07/06/2023
Taysha Gene Therapies plans to ask the U.S. Food and Drug Administration for permission to begin testing its gene therapy TSHA-102 in the U.S. https://buff.ly/3IZbXCt
31/05/2023
Better managing sleep problems in the clinic for girls and women with Rett syndrome may help to ease anxiety and improve mental health. https://buff.ly/3C5uV6p
25/05/2023
Columnist Jackie Babiarz says her daughter is becoming a small fish in a big pond as she graduates eighth grade and anticipates high school. https://buff.ly/3WFAja4
24/05/2023
The Rett gene therapy TSHA-102 was found in a mouse model to increase levels of the MeCP2 protein that’s lacking in people with the disorder. https://buff.ly/3MPPmdP
17/05/2023
Taysha Gene Therapies is planning an investigational new drug application to the Food and Drug Administration to test TSHA-102 at U.S. sites. https://buff.ly/456jUz9
11/05/2023
Columnist Jacqueline Babiarz explains why her family's annual Rett syndrome fundraiser honored her daughter's special educators. https://buff.ly/3LNk1GQ
10/05/2023
The Assistance Fund (TAF), a nonprofit that helps patients and families pay out-of-pocket healthcare costs, now includes Rett syndrome. https://buff.ly/3Bdmzcq
03/05/2023
Daybue (trofinetide), approved in US to treat Rett, is safely helping with young patients' neurobehavioral symptoms in a Phase 2/3 trial. https://buff.ly/3p3VJ3N
27/04/2023
As columnist Jackie Babiarz prepares for her family's 11th annual Rett syndrome fundraiser, she shares what makes the events so successful. https://buff.ly/3n9zqcl
26/04/2023
A real-world study found a "substantial" disease and economic burden, and too few treatments, for Rett syndrome patients in the U.S. https://buff.ly/3V7QvQm
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