P.O. Box 50030 London, ON N6A 6H8 info@rett.ca (519) 474-6877

Complex Care RS Pathway Clinic

Holland Bloorview Kids Rehabilitation Hospital (HBKRH) in Toronto now has a complex care clinic dedicated to children and adolescents with Rett syndrome. Our first official day of clinic was May 13, 2013. Clinics are scheduled six times per year on the second Monday of alternating months.

Nancy Campbell is a registered practical nurse at Holland Bloorview Kids Rehabilitation Hospital. She is the clinic’s nurse coordinator. ncampbell@hollandbloorview.ca
This clinic provides comprehensive medical care and care coordination for individuals with Rett syndrome less than 18 years of age. The diagnosis must be made by a qualified physician based on accepted diagnostic criteria OR genetic testing confirming a mutation in the MeCP2 gene. A physician referral is required. Outpatient referral forms can be found online at http://hollandbloorview.ca/programsandservices/Referrals

What to expect at your first visit

You and your child will meet with the team for approximately one hour. We will occasionally have medical or nursing students, resident physicians and other learners with us as well. We will try to answer your questions or put you in touch with other clinicians who can. We have a team of physicians and therapists we consult with regularly, including specialists in neurology, psychopharmacology, orthopedics, sleep medicine, cardiology, gastroenterology and augmentative communication. Our speech, occupational and physical therapists can liaise with your local therapists and school team to provide specialized advice when needed. At the end of each visit, you and your doctors will receive and updated “care plan,” which is a document summarizing you child’s medical and physical needs and management plan.

For more information please contact:

Nancy Campbell at ncampbell@hollandbloorview.caor 416-425-6220 x3210

Awareness Bracelets To Sell

The fundraising committee is in need of some assistance in the sale of silicone awareness bracelets.  This would involve individuals to place bracelets and collection boxes in the communities they live in, similar to the poppy drive.

It will require a maintenance of 1 visit every 1 to 2 weeks depending on sales.  This is an opportunity to spread the word and raise some funds to support the association.  Please contact Darcy Balak, O.R.S.A. ‘s Fundraising Chair,  darcy@rett.ca

Darcy will get these items out to you as quickly as possible to start raising awareness.

The Voice of Rett Syndrome

Just released February 10th, 2013.

This video was produced in recognition of 1,000 fans on the Ontario Rett Syndrome Association Facebook page. It is dedicated to all the courageous people living with Rett syndrome. – created at http://animoto.com

RTT Medical Seminar Webcast

On Friday April 27th , 2012 there was a medical multidisciplinary presentation about Rett syndrome from 9:00 a.m. to 10:30 a.m. at Bloorview Holland Kids Rehabilitation Hospital.  The purpose of this educational event was to provide health professionals in Ontario with the most current information about Rett syndrome.  The presenters were  Dr. Alan Percy, Dr. Walter Kaufmann, Dr. Peter Humphreys, Dr. James Eubanks and Dr. Patrick MacLeod.  This is a group of outstanding leaders in the field on Rett syndrome.

Bloorview Holland Kids Rehabilitation Hospital provided video conferencing throughout Ontario via  Telehealth.  Eight sites connected to the video and over 35 people attended the conferencing.

O.R.S.A. sponsored this Rett syndrome educational presentation event.

Together we can make “healthier tomorrows” for all those who courageously live with Rett syndrome.

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