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Welcome!

Take a look around! We have a ton to share with you! (and please share with us!). Everything here is hopefully something that will help your little girl fight a stronger fight against Rett Syndrome. Check out our product reviews, tips from other families, resource guides and doctor/therapist list!

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Disclaimer

Rett Girl! is only a referral site. Proceed with caution before purchasing an item, trying a new therapy or any of the tips recommended by our users on this site. Girl Power 2 Cure, Inc. is not liable for unsatisfactory or harmful outcomes. Especially in referrals involving diet, supplements or therapy, please check with your doctor before proceeding.

Resources

RESEARCH

Rett Syndrome Reseach Trust
Website: www.reverserett.org
Blog: www.rettsyndrome.wordpress.com
News and Newsletter Sign-Up: RTT Watch
Twitter: www.twitter.com/rsrt

RETT ORGANIZATIONS:

Girl Power 2 Cure
RettSyndrome.org
Israel Rett Syndrome Center
Rett Syndrome Association (UK)
Reverse Rett (UK)
Rett Syndrome Community Foundation (North Carolina)
Rett Syndrome Research Assistance (Ukraine)

Stitching Rett Syndroom (Netherlands)

PAPERS ON RETT SYNDROME FROM SPECIALISTS:

UNRECOGNIZED LUNG DISEASE IN CLASSIC RETT SYNDROME: A PHYSIOLOGIC AND HRCT STUDY

Cognitive Abilities of Rett Syndrome Patients have been Underestimated for Decades:                                                                                                                   Dr. Djukic from Montefiore Medical Center

Silent Angels:  Educating Others About Rett Syndrome                                                                                                                   From Katie’s Clinic for Rett Syndrome, Oakland, CA

Videofluororadiographic Descriptors of Swallowing Physiology in Typical Rett Syndrome: Post-Regression Stabilization During Early Childhood                                                                                          Suzanne S. Abraham

Multi-Modal Communication Strategies for
Children Who have Rett Syndrome

Linda J. Burkhart

Optimizing Nutrition for Girls Affected with Rett Syndrome
Sara-Jane White, Doctor of Naturopathic Medicine

Deep Sedation With Propofol in Patients With Rett Syndrome

Alan K. Percy, MD, etc.

ABOUT “GIRLS WITH RETT SYNDROME”
LETTER FROM RJ COOPER  – Pioneer in Assistive Technology
www.rjcooper.com

ADDITIONAL INFORMATION ON RETT SYNDROME:

Sample Home Exercise Program
Please check with your Rett Girls therapist or doctor before starting any of these exercises.  

REGIONAL

FLORIDA
ILRC OF NORTHEAST FLORIDA
WEBSITE
NORTHEAST
The School for Children with Hidden Intelligence
WEBSITE

 

RETT WE CAN VIDEO CHANNEL – a YouTube channel dedicated to Rett Girls taking on big challenges and showing off what they CAN do!