As October is coming to a close, we wanted to present this video made by the Ontario Rett Syndrome Association in collaboration with the other Rett Syndrome societies and associations in Canada, including us. Enjoy!
-The RSSBC Team
Light Up Purple For Rett Syndrome!
If you did not know already, October is Rett Syndrome Awareness Month!
This year, we are inviting you to help spread the word about Rett Syndrome. On October 29th, landmarks across Canada will be lit up purple for Rett Syndrome.
R.S.S.B.C. is looking for locations in your community that light up for various causes. If you know of a location that we should contact please let us know at info@rettbc.ca
Thank You!
-The RSSBC Team
New YouTube Videos!
Did you miss one of our amazing communication webinar sessions or wish to rewatch one?
Don’t worry we have a list of links for you!
Our next session is on Monday “AAC in School: Tips for Parent Advocacy”
PODDS and Literacy https://youtu.be/L–28fQw1jg
AAC: Where to Start https://youtu.be/fKsf6CmrYA8
Shared Reading and AAC https://youtu.be/bSjirGZq3vg
Supporting Communication and Independence with Grid https://youtu.be/uLKg2h2aHTc
-The RSSBC Team
YouTube Series
If you did not know, we have a YouTube channel! Our YouTube will be used to post seminars and educational videos, as well as resources. The link to our channel as well as our latest Zoom video will be down below:
Channel:
https://www.youtube.com/channel/UCo6ItnWGmP1ZbcdGbOaG1hw
RAFFLE WINNERS!
We are proud to finally announce our winners for the December Raffle. Thank you all for donating and spreading the word for Rett Syndrome!
In FIRST PLACE, we have Bri Milli. Congratulations Bri!
Our SECOND PLACE winner is Heather Smith. Thank you so much Heather!
Our THIRD PLACE winner is Barbara Wilson. Thank you Barbara!
December Raffle!
December 2021 Gift Giving for Rett BC
It is time for our annual December Raffle for Rett Syndrome! We aim to raise over $600 this year, and we are grateful for each and every ticket purchased. The link is down below, and let your friends and family know! Single tickets are $5. The prizes this year are three Visa gift cards worth $300, $200, and $150, with one winner each.
The deadline for the purchase of tickets is 12:00 am on Thursday, December 23, 2021, and the draw is Monday, December 27, 2021, at 11:00 am. More details are at the link below!
https://rettbc.rafflenexus.com/
THANK YOU!
A big thank you to everybody who has raised money for Rett Syndrome in the past couple of months, especially those who participated with their schools and businesses.
The Rett Syndrome Society of BC would like to thank Blue Mountain Elementary School in Maple Ridge for raising awareness about Rett Syndrome for the second year in a row!
We would also like to thank Megan Shewchuk from T’hekä Mixed Media for partnering with us during October for the fundraiser, and for all the work, effort, and love she put into making each of the toques. (see our October 18 news post)
Finally, we would like to thank Byrne Creek Community School for raising $200.00 this year in honour of a fellow classmate!
Canada Lights Up for Rett Syndrome!
October is Rett Syndrome Awareness Month! As it comes to an end, we want to feature the places that lit up yesterday (October 29th) for Rett Syndrome Awareness. Below is a slideshow of a few places in BC that we captured, as well as the list of places for all of Canada. Let us know if you noticed or visited a place in your neighbourhood that lit up! We are looking for more pictures and images for our website of places that lit up that we could not capture ourselves, and if you have some, please email them to info@rettbc.ca
-The RSSBC Team
FUNDRAISER ALERT!
We are proud to announce our partner fundraiser with T’hekä Mixed Media! T’hekä Mixed Media is a local business based in Maple Ridge, BC. They specialize in knitwear, stickers, and more! October is Rett Syndrome Awareness Month, and all proceeds will be donated to RSSBC. We hope you consider purchasing a beautiful hat to support the research, care, and lives of those with Rett Syndrome. -The RSSBC Team
From T’hekä Mixed Media’s Instagram @theka_mixed_media
“Hello everyone! My name is Kayla, I have Rett Syndrome. I use an eye-gaze computer. An eye tracker scans my eyes and lets me point to words that are programmed into the computer without using my hands. The computer then speaks all my thoughts! Cool, right? I like people to know that I understand what they say, please don’t ignore me!
My favourite food is junk food. I like to go to movies; my favourite studio is Pixar. I have a dog named Nova. My favourite song is The Circle of Life. My favourite TV show is Loki on Disney+.”
Kayla is an absolutely amazing human and we have teamed up to bring you something special this October. We both went to Elementary school together and recently reconnected when she came into my other job one day. We got to talking and thought this month would be an awesome opportunity to do some fundraising!! 💜💜💜
October is Rett Syndrome awareness month, so for the entire month of October I will be offering these beautiful purple toques (the Rett Syndrome ribbon colour) that Kayla picked out herself, and all proceeds will be going towards the Rett Syndrome Society of British Columbia (RSSBC) @rett_syndrome_bc link for the organization will be in my bio for the entire month so you can check them out yourself! Sizes and quantities will be limited! 💜
Go check out Kayla’s account as well at @kwalk.eats She loves making food and sharing her creations with everyone. YUMMY!
Images courtesy of T’hekä Mixed Media’s Instagram and Etsy
Josh’s Journey: Part 11
From Josh:
July 16, 2021
Last week we moved on from Niagara Falls and made our way to Emerald Lake, a combination campground & waterpark about an hour west of Toronto & used it as a base to explore the Toronto area.
Many of the famous attractions were closed, but we spent a day just wandering around Downtown Toronto and saw the CN Tower, Rogers Centre, Scotiabank Arena, the old steam train roundhouse, Union Station, and wandered along part of the waterfront. Oliver met Tim Horton & got a Beavertail (he loves those things) and also got a couple of Toronto Raptors jerseys!
We also spent a day at the Toronto Zoo. Unfortunately, it was really hot which is always a challenge for June. We also found that many of the exhibits at the zoo, while technically wheelchair accessible, are unable to be viewed while seated in a wheelchair due to solid (not glass) guard rails. As June is connected to two tubes at pretty much all times now (one into her jejunum with her food going in and one connected to her stomach allowing it to drain) you can imagine that the process of getting her disconnected and in & out of her chair every few minutes gets pretty old…. Oliver got himself a nice water bottle as a souvenir – he LOVES gift shops 
We also spent one whole day and one evening at the waterpark – it was super busy the day we were there, and we had fun out on the inflatable water toys in the lake, and wading in the kid’s pool. The evening we went to the waterpark it was raining and there was hardly anyone around. Oliver and I had the waterslide all to ourselves!
June is still pretty much the same – ongoing GI struggles but enjoying herself most days. One good seizure a few days ago but otherwise stable in that regard. Fingers crossed we get some reprieve from the heat next week.
