• Rett Syndrome AGM

    Rett Syndrome AGM

    The Rett Syndrome Society of BC Annual General Meeting is Sunday April 30th at 7:30 pm! For those who are part of our newsletter mailing list, you should have gotten an email invite, if not, please email so that you can participate! As a society, we would love to hear your opinions, thoughts, feelings,…

  • Raffle Winners!

    Raffle Winners!

    We are proud to announce the winners of this year’s raffle. Thank you to all who participated! $300.00 Amazon gift card – T. Faulkner, from Kamloops, BC $150.00 Amazon gift card – K. Krall, from North Delta, BC $100.00 Amazon gift card – K. Bjorgaard, from Thornhill, BC

  • Winter Raffle

    Winter Raffle

    The Winter Raffle is finally here! Ticket sales end December 27th and are available here:

  • Christmas Tree Festival

    Christmas Tree Festival

    A huge thank you to the Suhl Family for all their time, effort and donations towards the 1st awareness tree for the Port Coquitlam 10th Annual Christmas Tree Festival. For those that don’t know the festival is a chance to vote on your favourite Christmas tree that have been set up throughout the city of…


    Thank you to all the Rett Syndrome Organizations and Associations of Canada: Rett Syndrome Society of BC Rett Syndrome Society of Alberta Saskatchewan Rett Syndrome Association Manitoba Rett Syndrome Association Ontario Rett Syndrome Association Association québécoise du syndrome de Rett

  • Locations for #LightCanadaPurple

    Locations for #LightCanadaPurple

    Here are the locations for this year’s cross-Canada collaborative light-up! Feel free to take photos of the places lighting up in your hometown. We are so excited to see Canada glow purple this year. -The RSSBC Team

  • Rett Syndrome Awareness Video

    Rett Syndrome Awareness Video

    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!

    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…

  • New YouTube Videos!

    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–28fQw1jg AAC: Where to Start Shared Reading and AAC Supporting Communication and Independence with Grid…

  • 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:


    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 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…


    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…

  • Canada Lights Up for Rett Syndrome!

    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…



    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…

  • Josh’s Journey: Part 11

    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…

  • Josh’s Journey: Part 10

    Josh’s Journey: Part 10

    From Josh: July 6, 2021 We spent our last couple of days at Sauble Beach enjoying the lake and the beach. We built some couple sandcastles, swam, and generally enjoyed ourselves. We also took June out into the lake in the small inflatable boat we have, which she seemed to quite enjoy as she rolled…

  • Josh’s Journey: Part 9

    From Josh: June 28, 2021 We spent our last day on Manitoulin Island enjoying a walk along the waterfront in the town of Little Current. Unfortunately, the weather was cloudy & drizzly so we didn’t get any more lake time in, but we did find this super awesome automated Pizza machine in a small shipping…

  • Josh’s Journey: Part 8

    From Josh: June 24, 2021 Canada is HUGE. Since our last update, we’ve driven over 2100km from SE Saskatchewan, through Manitoba (which is closed to us) across Northern Ontario, around the top of Lake Superior, and arrived on Manitoulin Island. And we covered that distance in 4 drive days, with just one day off thrown…

  • Kayla Tries: Spicy Mango Paradise Roll

    Spicy Mango Paradise Roll 🥭🍣 Spicy tuna, spicy sockeye salmon, avocado, mango, mango apple sauce, and of course, spicy sauce. This roll I found was different, it was spicy and even possibly healthy?! It had a little salad of lettuce and beets, yum! 5/5 ⭐️, would eat again Follow my Instagram @kwalk.eats

  • Josh’s Journey: Part 7

    From Josh: June 17, 2021 After leaving Grasslands National Park, we continued our way east on some secondary highways in southern Saskatchewan. We made our way through Gravelbourg, a small francophone town that was featured in a recent season of CBC’s “Still Standing”, a TV series showcasing Canada’s struggling small towns. While much of what…

  • Josh’s Journey: Part 6

    From Josh: June 14, 2021 Grasslands National Park is Canada’s only national park that represents a prairie grassland ecosystem. It’s located in Southern Saskatchewan and is broken up into two parts that are about 150km apart – the West-East Blocks. We recently spent four nights in the West Block and were really surprised by how…

  • Josh’s Journey: Part 5

    From Josh: June 9, 2021 We recently got to spend about 18 hours in Dinosaur Provincial Park in SE Alberta and wish we had a week. It was unbelievable there, with hiking and exploring to do for days! I got myself stuck halfway around the campsite loop (the park’s website said we could fit in…

  • Josh’s Journey: Part 4

    From Josh: June 4, 2021 We’ve now been out of our house and on the road for a full two weeks. Can’t believe it – it’s flown by and we are nowhere near feeling like we’re done yet, which I suppose is good! Road life seems to suit us well so far – we are…

  • Kayla Eats: Spicy Mango Poke Bowl

    Today’s Eat: Spicy Mango Poké Bowl made by myself and the #kwalkhypeteam The process 🥣:My favourite parts were ripping the seaweed, peeling the onion, and squeezing and mixing the mayo and sriracha to make Spicy Mayo. I have been dreaming about trying my Mango Pulp. I can’t wait to see how it tastes, but I think…

  • Josh’s Journey: Part 3

    From Josh: May 29, 2021 Since we left Vancouver on Tuesday morning, our days have been pretty busy! We drove a full day to Clearwater, BC where we camped before continuing on to Mt. Robson Provincial Park for a night. We had planned to spend 3 nights there, but with our delayed departure due to…

  • Kayla Eats: Rainbow Cupcakes!

    Rainbow 🌈 Bit cupcakes with vanilla whipped frosting and rainbow sprinkles; made by myself and the #kwalkhypeteam Making the Cupcakes 🧁:We poured in the cake mix, my first favourite part was cracking the eggs. Then we mixed in the ingredients and cooked them in the oven. My next favourite part was putting the cupcake in my…

  • Josh’s Journey: Part 2

    Josh’s Journey: Part 2

    From Josh: May 23, 2021 We made it to Vancouver, picked up June from Canuck Place (where she had a great stay – thank you CP team!), and settled into our spot in Vancouver to wait out the end of the BC travel restrictions. We’ve been on a couple of walks and are also using…

  • Introducing: Kayla Walker!

    Introducing: Kayla Walker!

    We are excited to be posting content about Kayla Walker and her food blog. Kayla is 19 years old and loves to have fun and spend time with friends and family. Kayla’s mom, Christinea, is the president of RSSBC. Her food blog is on Instagram: @kwalk.eats Here is an excerpt from her page!

  • Josh’s Journey

    Josh’s Journey

    We are very happy to introduce a new ongoing segment in our news! Josh McCulloch and his family have currently embarked on a journey across Canada in their RV. Josh and his wife have two kids, and one of them, June, has Rett Syndrome. Josh has given us permission to share his story and we…

  • iPad Raffle Winner

    iPad Raffle Winner

    Thank you all for participating in the raffle for this year! We are pleased to announce the winner…Carole St. Arnaud! Congratulations Carole!

  • iPad Raffle!

    iPad Raffle!

    It’s finally here! Our annual fundraiser is up and running, however, this year it looks a bit different!This year you can purchase your tickets online! No more need for paper booklets, collecting change, and mailing checks. Simply follow the link, purchase your tickets and share this post with all your family and friends! This fundraiser…

  • AGM-Tonight


    RSSBC’s AGM is tonight (May. 2nd) at 7:30 pm on Zoom! Please contact for the link and more information! Hope to see you there 🙂 -The RSSBC Team

  • AGM Reminder and Itinerary

    AGM Reminder and Itinerary

    AGM  May 2nd @ 7:30pm via Zoom  Please join us for our annual general meeting. All members need to attend this ONE meeting on an annual basis to ensure we can continue to support families. This is your time to ask questions and have your voice heard. So far all those on the board would…

  • National Volunteer Week- Vivian Hou

    National Volunteer Week- Vivian Hou

    UBC student, Vivian Hou, reached out to RSSBC in June of 2020 to offer her amazing drawing/sketching skills. Vivian spent months creating a new tool for children to understand why their peers are both similar yet different. This amazing tool was built into a coloring book that can be used in both school or community…

  • National Volunteer Week- Arlena Musinga Kamuzima

    National Volunteer Week- Arlena Musinga Kamuzima

    UBC student Arlena approached RSSBC in 2020 just after the pandemic hit. She has been building RSSBC’s newsletter designs and sending them to all our members and supporters on a regular basis. She has found new programs to make this not only easier for the society but also more appealing for those to read and…

  • National Volunteer Week- Kathryn Shantora

    National Volunteer Week- Kathryn Shantora

    Kathryn Shantora is the co-founder of RSSBC. She helped build the community well before RSSBC was established in 2013. She hosted/supported multiple meetings and connected with many families giving them a place to feel safe while talking about daily challenges. Kathryn’s busy schedule meant she was not able to take on a large role with…

  • National Volunteer Week- Christine Little

    National Volunteer Week- Christine Little

    Christine is a veterinarian by trade and has been a huge asset to our organization. She comes with a medical background and is able to put medical terminology to plain language. Christine works tirelessly on creating snapshot reports on research papers all while finding ways that RSSBC can raise funds to ensure our programs are…

  • National Volunteer Week- Karl Lam

    Karl, a web designer and father to a child with Rett Syndrome connected with RSSBC after his child was diagnosed. He offered up his skill set to help develop a new website, promoting not only the society but to help get resources and information to families and supporters in a timely and efficient manner. Karl…

  • National Volunteer Week- Alice Wang

    National Volunteer Week- Alice Wang

    Alice has been volunteering with RSSBC since the summer of 2020. She was instrumental in our Rett Syndrome awareness campaign in October. She tirelessly contacted every mayor/city in which a person with Rett Syndrome lived in BC, asking for a light-up event and/or proclamation. It was because of her efforts that we had 10 locations…

  • National Volunteer Week- Leigh Anne Stitt

    National Volunteer Week- Leigh Anne Stitt

    Entrepreneur, Leigh Anne Stitt has been volunteering with RSSBC for two years. She reached out to RSSBC after her niece was diagnosed. She wanted to help not only her niece and family but others like them. Leigh Anne accepted the Vice President position and has been a huge assist to the society. Leigh Anne brings…

  • National Volunteer Week- Rachel Kwong

    National Volunteer Week- Rachel Kwong

    High school student, Rachel Kwong has been volunteering with RSSBC since August 2020. Rachel has been working on perfecting RSSBC’s new website. Each week she looks at the website and ensures that it is current, appealing, and easy for all to use. Without Rachel, RSSBC would not be able to keep our community informed and…

  • National Volunteer Week- Tiffany Wai

    National Volunteer Week- Tiffany Wai

    UBC student, Tiffany Wai has been a volunteer with  R.S.S.B.C. for just over a year now. She contacted the society in 2020 just after the pandemic first hit. She was looking for a way to apply her skill that would serve our community. Throughout the year she took on multiple roles such as social media…

  • National Volunteer Week

    National Volunteer Week

    The Value of One, The Power of Many, reflects on the awe-inspiring acts of kindness by millions of individuals AND the magic that happens when we work together towards a common purpose. Therefore RSSBC will be showcasing one amazing volunteer per day throughout the week describing how their efforts have impacted RSSBC and the families…

  • Easter Tips

    Easter Tips

    Here is Day 4 of our Easter Survival Tips! We would like to remind you that every child is different and unique and responds to stimuli in different ways. Here is what worked for us! Finally, plan ahead. You know your child better than anyone, so anticipate trouble spots before they happen. Pack a busy bag…

  • Easter Tips

    Easter Tips

    Here is Day 3 of our Easter Survival Tips! We would like to remind you that every child is different and unique and responds to stimuli in different ways. Here is what worked for us! Go candy-free. Children with special needs often have some sort of food restriction. Eliminate the issue by filling your Easter eggs…

  • Easter Tips

    Easter Tips

    Here is Day 2 of our Easter Survival Tips! We would like to remind you that every child is different and unique and responds to stimuli in different ways. Here is what worked for us! Adapt your Easter Egg hunt. No one is less happy than a kid with an empty basket at the end of…

  • Easter Tips

    Easter Tips

    Here is Day 1 of our Easter Survival Tips! We would like to remind you that every child is different and unique and responds to stimuli in different ways. Here is what worked for us! Put down that Easter bonnet. The adorable smocking on that fancy Easter dress or the stiff dress shirt and tie might…

  • Virtual Family Social

    Virtual Family Social

    Join us for our virtual family social on Wednesday at noon! Date and Time: Wednesday, March 24, 2021 at 12:00 pm Location: Zoom Zoom Link: Contact for the link and more information If you have any questions or concerns, please contact also. Keep up to date with family socials like this one and what…

  • Rett Syndrome Family Symposium

    Due to Covid 19 this event has been postponed.

  • Welcome to our new website!

    Welcome to our new website!

    I would like to take a minute and say thank you for visiting our website. Learning about Rett Syndrome can feel daunting regardless of the reasons you are doing so. However, know that you are not alone. We at R.S.S.B.C. are here to support you whether you have a relative with Rett Syndrome, are a…