-
Join 470 other subscribers
-
Recent Posts
Recent Comments
melelllan on A Decade of Hope Fa BEL on Daybue Trail: 2 Weeks Uni… melelllan on Daybue Trail: Two Months … Rune on Daybue Trail: Two Months … dian dana on Growing up One in a Milli… Archives
- May 2024
- April 2024
- March 2024
- January 2024
- December 2023
- November 2023
- October 2023
- September 2023
- August 2023
- July 2023
- June 2023
- May 2023
- April 2023
- March 2023
- February 2023
- January 2023
- December 2022
- November 2022
- October 2022
- September 2022
- August 2022
- July 2022
- June 2022
- May 2022
- April 2022
- March 2022
- February 2022
- January 2022
- December 2021
- November 2021
- October 2021
- September 2021
- August 2021
- April 2021
- February 2021
- November 2020
- October 2020
- July 2020
- May 2020
- April 2020
- March 2020
- February 2020
- January 2020
- November 2019
- October 2019
- September 2019
- August 2019
- July 2019
- June 2019
- May 2019
- April 2019
- March 2019
- February 2019
- January 2019
- December 2018
- November 2018
- October 2018
- September 2018
- August 2018
- June 2018
- May 2018
- April 2018
- March 2018
- January 2018
- December 2017
- October 2017
- September 2017
- August 2017
- July 2017
- May 2017
- April 2017
- March 2017
- February 2017
- January 2017
- November 2016
- October 2016
- September 2016
- August 2016
- July 2016
- June 2016
- May 2016
- April 2016
- March 2016
- January 2016
- December 2015
- November 2015
- October 2015
- September 2015
- August 2015
- July 2015
- June 2015
- May 2015
- April 2015
- March 2015
- February 2015
- January 2015
- December 2014
- November 2014
- October 2014
- March 2014
- February 2014
- January 2014
- December 2013
- November 2013
- October 2013
Categories
- Acadia
- Acadia Connect
- acceptance
- ACS Medicinal Chemistry Division
- America's Got Talent
- American Chemical Society
- Anavex
- Anavex 2-73
- animals
- Ann Romney Center for Neurological Diseases
- anxiety in Rett syndrome
- Apps
- Army of us
- Ascend Rett syndrome conference 2022
- Association Francaise du Syndrome de Rett
- Ataxia
- Australian Rett syndrome Association
- Avexis
- baseball
- Big Bang
- bone deformity in Rett syndrome
- Boston Marathon
- boys with Rett syndrome
- breakthrough therapy
- Breathing issues in Rett syndrome
- Brigham and Women's
- chan zuckerberg initiative
- chan zuckerberg initiative, huda zoghbi
- Child of Mine
- clinicaltrials.gov
- Communication
- concussion
- Congress
- cure
- Daffodil trial
- Dame Margaret Brimble
- David Clements
- Daybue
- Death in Rett syndrome
- Dr. Helen Leonard
- Dr. Jenny Downs
- Dr. Robert Chesanow
- Dr. Walter Kaufmann
- Education
- Emily Shifflet
- FDA
- FoxG1
- Fragile X
- French Rett Syndrome Association
- fund-raising for rett syndrome
- gp2c
- grief
- hand clasping in Rett syndrome
- homeschooling
- hope
- Huda Zoghbi
- Human body
- IgF-1 trial
- International Rett syndrome Foundation
- International Women's Day
- InterRett
- Intrepid 2566
- IRSF
- ketamine
- Kevin Black
- Klinefelter's syndrome
- Kodi Lee
- kyphosis
- LAVENDER TRIAL
- margaret brimble
- Mark Brimble
- MecP2 duplication
- Mother's Day
- Music
- national poetry month
- Neuren
- Neuren Pharmaceuticals
- Neurology.org
- Newron
- NFL
- nnz 2566
- NNZ-2566
- NNZ-2566 trial
- Orpan Drug Status
- orphan drug designation
- Pain in Rett syndrome
- Peer Reviewed Medical Research Program
- Phone
- Poetry
- poetry month
- Puberty
- Radiology in Rett syndrome
- Raising a Hand
- Rare disease day
- Remarkable Rett-a podcast series
- Rett Research
- Rett Syndrome
- Rett syndrome Awareness
- Rett syndrome conference 2016
- Rett syndrome Conference 2018
- rett uk
- Rettland Foundation
- rettland.org
- rettsyndrome.org
- Right to Try Law
- RSRT
- sarizotan
- scoliosis
- screaming in rett syndrome
- seizures in Rett syndrome
- service dog
- sibling sounding board
- skeleton
- Special needs Mother's Day
- Special needs siblings
- Speechless
- Talking
- TBI
- Telethon for Kids
- Texas Children's Hospital
- the sea
- tracy chapman
- Trail to a Texas Trial
- Trofinetide
- Trofinetide Pediatric trial
- Trofinetide Phase III
- Trofinitide
- ucla statistics dept.
- Uncategorized
- white house
- Wizard of Oz
Meta
Monthly Archives: May 2022
ASCEND 2022!
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 Acadia, Anavex, Dr. Andreas Rett, Dr. Huda Zoghbi, Dr. Walter Kaufmann, FDA, hope, Hope in rett syndrome, Natural History Study, Rett syndrome, Rett syndrome Awareness, Rett syndrome clinical trials, Rett syndrome research, Rett Syndrome Symptoms, Rettsyndrome.org, Taysha, Trail to a texas Trial, Trofinetide
Leave a comment
Trail to a Texas Trial 