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

October is Rett Syndrome Awareness Month

October is Rett Syndrome Awareness Month internationally. This year the month has also been recognized by the Government of Canada and listed on their calendar of health promotion.

https://www.canada.ca/en/health-canada/services/calendar-health-promotion-days.html

The month gives us a chance to educate people in our communities about Rett Syndrome and how it impacts those affected and their caregivers. O.R.S.A. will be focusing on a different topic each week during the month:

  • Week 1: General Rett Syndrome Awareness
  • Week 2: Caring for Individuals With Rett Syndrome
  • Week 3: Communication and AAC
  • Week 4: Basic Science and Clinical Research

As part of this, O.R.S.A. will officially launch a YouTube channel with interviews from speakers and participants at our 2018 conference. The videos will be rolled out throughout the month and we encourage everyone to share them with their family and friends.

Once again, major attractions in Ontario will be lit purple on October 29th.

  • CN Tower: beginning at sunset, except for a standard 8 minute light show at the top of each hour
  • Niagra Falls: 10pm – 10:15pm
  • Peace Bridge: Dusk – 1am – Moved to October 28th due to unforeseen circumstances
  • 3D Toronto Sign: 9am until 9am next morning (in rotation with standard lighting) – Moved to October 30th due to vigil for Pittsburgh tragedy

We encourage everyone to light up their homes or business place purple as well! We have a flyer with basic information about Rett syndrome available to download and print for sharing with your neighbours.

Please send any photos to us on Facebook, Twitter or email bhiggins@rett.ca. Watch our social media accounts for lots of updates throughout the month.

Carrying a Dream

A father’s dream; a daughter’s destiny. Follow your dreams and overcome the challenges in your life.

Jason Dekorte, O.R.S.A. member and father of Scarlett recently travelled to Peru to fulfill a lifelong dream of visiting the Inca ruins while raising awareness for Rett Syndrome. He plans to produce a documentary about the trip.

Please check out the indiegogo page and watch the trailer!

https://www.indiegogo.com/projects/carrying-a-dream#/

AGM – Friday August 10, 2018

The Ontario Rett Syndrome Association’s

ANNUAL GENERAL MEETING

When: Friday August 10, 2018

Where: Holiday Inn and Suites

2565 Argentia Road, Mississauga ON L5N5V4

McKenzie Room 2nd Floor

PH: 905-542-2121

Time: 7:00 p.m. – 8:30 p.m.

Membership must have been obtained at least 45 days (by June 26th, 2018) prior to the meeting in order to be eligible to vote at the meeting. RSVP: Karen Congram – Kcongram@rett.ca

Directions & Map http://www.ihg.com/holidayinn/hotels/us/en/mississauga/msgon/hoteldetail/directions

Run4Rett 2018 – Sunday September 16th

The 2018 Run4Rett will be held Sunday September 16, 11:00 a.m. at Richmond Green Park, 1300 Elgin Mills Rd. E., Richmond Hill, ON, L4S 1M5.

The 14th annual 1k and 5k run / walk is a signature fundraiser for the Ontario Rett Syndrome Associated (O.R.S.A.). It is an opportunity to bring us together to raise awareness and to show a united and strong voice for Rett syndrome to hundreds of participants and supporters. Our goal is to raise $60,000.

All proceeds fund crucial activities organized by O.R.S.A.’s volunteer board of directors. These include:

  • Funding of 3 Rett syndrome clinics in Ontario
  • The Hope Fund which provides grants to Canadian researchers
  • Bi-annual family conference and medical symposium
  • The Canadian Rett Syndrome Registry

Please JOIN US! Walk, run or volunteer for the 1K or 5K with family and friends! Families are welcome!

Register online now (closes September 13)

Download printable pledge and registration form

DONATE NOW

2018 Hope Fund Grants Awarded

The Ontario Rett Syndrome Association (O.R.S.A.) Board of Directors has unanimously approved the funding of two $25,000 Research Grants from the Hope Fund for 2018. This is the fourth year in a row that the Hope Fund has awarded grants totaling $250,000!

The first $25,000 grant was awarded to Dr Mojgan Rastegar from the University of Manitoba. Dr Mojgan Rastegar plans to further study the role of metformin (a current and commonly available drug, used most frequently in the treatment in diabetes) as a potential therapeutic agent in the treatment of Rett Syndrome. Metformin is thought to possibly stimulate the key system that is underactive in Rett Syndrome. There is already a considerable amount of preliminary data to support this line of reasoning. This study aims to help take this “to the next level”. Dr Rastegar has been a prominent Rett Syndrome researcher for a number of years, and is a past grant winner who has shown passion, dedication, and persistence toward Rett research.

The second $25,000 grant was awarded to Dr Kerry Delaney to study neural connectivity in mosaic brain tissues using newer optogenetic techniques, hoping to shed further light on the clinical implications of the real-world heterozygosity in female Rett syndrome brains. It is hoped that this preliminary study may lay the foundation for future studies and for larger CIHR grant applications. It also will help to bring new researchers into the Rett field. One reviewer has described this proposal as being “at the cutting edge of technology, and addresses an area that until now has remained untouchable”.

These applications were received and evaluated by O.R.S.A.’s Research Advisory Committee that comprised impartial and prominent neurologists, geneticists and scientists from across Canada.