May 14, 2017

Resources

We have compiled some resources that you may find useful. The links the left will take you to info about clinics in the Northwest and other Rett syndrome websites. If you know of a resource that you feel should be listed here, please contact us.

Please note: Although we have made every effort to ensure that all links leaving this site are appropriate the NWSRA cannot be held responsible for information found on other Web sites.


Websites

RettSyndrome.org

For 20 years, we have relentlessly pursued advanced and comprehensive research to transform the lives of all those affected by Rett syndrome. We are focused on delivering treatments and ultimately a cure for Rett syndrome while empowering families with the resources, connections and encouragement they need to thrive.

Rettnet email group


Ontario Rett Syndrome Foundation

The Ontario Rett Syndrome Association (O.R.S.A.) exists to ensure that children and adults with Rett Syndrome are enabled to achieve their full potential and enjoy the highest quality of life within their community.


Rett Syndrome Research Trust

The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive the development of treatments and cures for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world’s premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.

By funding the most Rett research worldwide, $58 million since 2008, we strive to put ourselves out of business as soon as possible.


Oregon Family-to-Family Health Information Center

“Almost every one of the resources on this page was written by parents of children with special physical, developmental, or behavioral health needs.  There is a lot of wisdom here, but remember that you must always do your own research.  What worked for someone else may not work for you.”

OHSU Tip sheets and toolkits


Books

Coming Soon!


Health Care Providers

Dr. Mario Petersen, MD, Developmental Pediatrician

CDRC on the 7th floor of the Doernbecher Children’s Hospital
700 SW Campus Drive
Portland, OR 97239503
503-346-0640

Jennifer Caserta, MD, Pediatric Medicine

Northwest Pediatric Center
1911 Cooks Hill Road
Centralia, WA 98531
(360) 736-6778
http://nwpeds.com/

Russell Saneto, D.O., Pediatric Neurology
Seattle Children’s Hospital
4800 Sand Point Way NE
Seattle, WA 98105
206-987-2078
http://www.seattlechildrens.org/clinics-programs/neurology/contact/

Susan Apkon, Rehabilitative Medicine
Seattle Children’s Hospital
206-987-2114

Cheryl Parker, Orthopedics
Seattle Children’s Hospital
206-987-2109

Daniel Listig, Pediatric Gastroenterology
Mary Bridge Children’s Health Center
311 S. L St.
Tacoma, WA 98405
253-792-6630

Robert Cooper, Rehabilitative Medicine
Mary Bridge Children’s Health Center
311 S. L St.
Tacoma, WA 98405
253-403-4437
http://www.multicare.org/home/provider/robert-cooper

Adam Cramer, DDS, Rett Dad and Dentist to several Rett girls
Cramer Dentistry
1502 Bishop Rd.
Tumwater, WA 360-357-4500
http://www.cramerdentistry.com/services.php

Providence Physical Therapy and Aquatic Center for therapeutic swimming
1900 Cooks Hill Rd
Centralia, WA 98531
360-330-8627

Kirk Starr, MD- pediatrician
Pediatrics NW
316 Martin Luther King Jr Way
Tacoma, WA
253-383-5777

Majeed Al-Mateed, MD- pediatric neurologist
Multicare Tacoma
311 S. L St.
253-403-1419

Dr. James Jantzen, Pediatrician
509-665-5851
Wenatchee Valley Medical Center
900 N. Mission St.
Wenatchee, WA 98801

Susan Esco, MS CCC-SLP
Manager & Provider
AAC Solutions & Rehab Services, LLC
509-230-8876
www.aacsolutions1.comsusan@aacsolutions1.com

Pediatric Development Program Rett Syndrome Clinic
Legacy Emanuel Children’s Hospital
Portland, OR
503-413-4623
Lisa Shorett, Intake Coordinator
Clinic held first Thursday of each month