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 we wanted to see was closed due to COVID (the French bakery/cafe was top of our list), we did manage to get a personal tour of the local Cathedral from the same guide that was on the show! It was a great experience, and June actually seemed very interested in all of the art inside. We had planned to be in the Winnipeg area this week, but with Manitoba pretty much closed to non-residents, we needed to find somewhere else to hang out for the week while we waited to see whether Ontario was going to open up.
We wanted to be close to the Saskatchewan/Manitoba border, to give us the possibility of driving right across Manitoba in one day. I seem to have lucked out in finding Moose Mountain Provincial Park in SE Saskatchewan! It is a large park that actually has a community inside of it – apparently the only park in the province like it. There are a number of lakes – one of which has a nice beach and is swimmable – as well as golfing and lots of walking/cycling trails. They even have full service (water, sewer, electric), pull-through sites! We were able to get 6 nights in a huge site with a massive lawn area! We’ve been mostly relaxing here – we had one beach day, but otherwise have been hanging around the campsite and trying to slow down a bit.
June has had a few more rough patches the last few days too – she is having more blood show up in her stomach drainage and has been more upset/irritable at times too. We’re hoping this will pass soon. Today she slept on and off all afternoon & it’s nice to be able to just let her do that when she needs it. With Ontario having just announced they are removing their travel ban, Saturday we are continuing east – it will be a long drive day from here to western Ontario!
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 much we liked it there. I booked us there as it is one of Canada’s Dark Sky Preserves – areas of the country where there is virtually no light pollution so you can get a clear view of the night sky. But there is much more to Grasslands than that! We enjoyed walks through the native prairie, biking around the campground, learning about and seeing wildlife, exploring the backcountry by truck, and experiencing some insane weather.
There is a herd of wild Bison at Grasslands that were re-established thereafter nearly becoming extinct. They roam freely, grazing on native grasses, and are generally undisturbed by people and cars. In addition, we saw Coyotes, a Badger, Black-Tailed Prairie Dogs (different from the common Gopher), and lots of different birds.
Our time in Grasslands was quite the adventure though, and to be honest we were pretty fatigued by the end of our time there. The day we arrived it was very windy – so windy that the auto-leveling system in our trailer was confusing and wouldn’t level itself. The wind kept picking up our plastic leveling blacks and blowing them across the prairie That night, we experienced the first of two major prairie storms. Torrential rain, high winds, lightning, and thunder – it was the first storm we’d experienced in the rig and we were quite nervous.
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 our site – which we did – but the road to get there was WAY too tight) and had to back out, and then continue backing around the loop road the wrong way, right into our site. It was an adventurous introduction to the park, and I was pretty proud of myself for being able to do it without damaging anything! I’m sure we greatly amused the twenty-somethings that were watching the whole thing unfold. Once we were set up we headed out for some short walks along a 3km scenic loop drive in the park and got to see 2 real dinosaur skeleton fossils exactly where they discovered them.
On our next visit here we’d love to do one of the guided walks with a park interpreter to see even more fossils! We were treated to some dramatic skies and a lightning show near the end of our visit as well. Can’t wait to go back there – a trip highlight so far!
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 enjoying seeing and doing new things together. June has been doing reasonably well since the last update – she hasn’t had any seizures, and overall seems to be feeling well most days. She is still having intermittent pain in her head and blood showing up in her gastric drainage, which we are still assuming is coming from her sinuses. We have been using a steroid nasal spray along with a humidifier at night to help give her some relief which seems to be working. Other than that, nothing major to report, which is always a good thing for June.
Since our last post, we’ve moved on from Hinton/Jasper (after spending our last day at Talbot Lake in Jasper NP) and spent 5 nights in a really nice campground just outside Edmonton in a town called Devon. We had a lovely grassy spot overlooking the North Saskatchewan River and used it as a base to explore the Edmonton area. Unfortunately, many of the things we wanted to see or do were closed but we got to see the Alberta legislature & day-tripped out to Elk Island NP where we saw beavers and Bison. We also took the opportunity to slow down and enjoyed a few days relaxing on our site. Oliver bought himself a new RC boat and loved being above to drive it just across the street from our site!
Today we arrived in Drumheller AB and after getting set up went for a drive to explore the badlands around the Royal Tyrrell Museum and see the surrounding area. It is stunningly beautiful here!
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 I will marry it. The prawn and crab smelled sweet. Making your own poké is LOTS of work. I wouldn’t recommend it. 1/5⭐️
Eating It 🍴: Wow! This was scrumptious and amazing! So it was a little bit restaurant-style, it didn’t taste homemade (to toot my own horn 🎺). The Mango Pulp was a little bit sour and juicy. Mixed with the Spicy Mayo it tastes sugary and creamy. I would get more and eat it again. I recommend you try my Spicy Mango Poké Bowl! 5/5⭐️
Ingredients: Sushi rice, mango pulp, spicy mayo, alfalfa sprouts, cucumber, red onion, avocado, corn, prawns, crab, seaweed, and sesame seeds.
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 travel restrictions, this was the part of our itinerary we had to shorten up which is unfortunate as we had a beautiful camp spot in the forest with mountain views between the trees. We’ll definitely go back there one day.
We arrived early enough in the day to fit in a bike ride up to Kinney Lake – the first stop on the way to the famous Berg Lake at the base of Mt. Robson. It was 7km one way uphill to the lake, falling the river the whole way. We were able to ride almost the entire way without walking! Stacy and Oliver had to jump off their bikes during some of the steeper sections to push the back of June’s bike trailer to help her and I get up those parts. Pulling an extra +/- 100lbs uphill makes for an excellent leg workout. The ride back down was worth the effort – 15 solid minutes of fun, fast downhill riding!
We’ve now made it to Hinton AB, just east of Jasper National Park. We’ve been enjoying (socially distanced) visits with Stacy’s sister playing disc golf and going to the local bike park. June had an exciting ride down one of the trails here too (see video – she was not hurt)!One more day here before heading east to Edmonton.
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 hand and playing with it. I turn cupcakes upside down and roll them in sprinkles because I have Rett Syndrome and limited hand use, this is the easiest and most fun way to decorate! I love it! 4/5 ⭐️, would make again.
Eating the Cupcakes: I loved them! They were moist and sugary. The bottoms got a little bit burnt so they were a little bitter but the icing helped. I enjoyed the crunchy sprinkles. They looked pretty and colourful! 5/5 ⭐️, would eat again
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 our time to tweak a few things in the RV. June seems to be feeling better the last few days also – more alert, happy and comfortable, which we are very thankful for. Today she even tried some ice cream! Tuesday we head east!
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
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 are excited to post their updates and follow their adventures!
Sincerely,
The Rett Syndrome Team
May 9
From Josh:
Things are starting to feel very real! We have been filling our storage locker, selling off items we don’t want to keep, and generally purging. We’ve been madly ordering items we need for the RV, and trying to figure out storage, organization, and overall details for living in an RV full time.
Next week is my last week at work. The following week June goes to Canuck Place while we finish packing up, and after that, we’re out of our house and off on some sort of an adventure. Honestly, it’s been a bit anticlimactic – with the pandemic and current travel restrictions we really aren’t sure where we’ll be in a few weeks, and for us, part of the fun of travel is anticipating what’s coming. We’ve had to make a couple of different backup plans in case restrictions continue or change, but we know we’ll have lots of fun and make lots of memories.
Last weekend we got out on our first test trip with the new rig. While there were some hiccups and challenges, overall it went quite well and everyone had a good time!
Next week is full of various appointments for June, including one with an Ear, Nose, and Throat specialist we’re very much looking forward to. For years now we’ve always thought June’s internal bleeding has been coming from her stomach and esophagus. But with a recent endoscopy showing nothing significant (again), and some other clues suggesting her nose, we are now quite suspicious that June’s sinuses might be the source of the bleeding. She’s had a couple of days this week with full bags of blood draining from her stomach, so we’re hoping this appointment helps us get to the bottom of this!
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 offsets all or most of our operating costs all year so we need to make it a huge success, please share this link as much as possible and good luck to everyone that enters.
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 like to carry on their titles and duties. However, if you would like to put your name/skillset forward we would be extremely grateful and welcoming. The Value of One, The Power of Many. Please contact info@rettbc.ca for the Zoom link!
Note: This AGM is for mostly incumbent members and families of RSSBC. If you have any questions contact info@rettbc.ca also.
Here is the itinerary so you know what will be happening!
RSSBC AGM 2021 Itinerary
Approval of Minutes
Approval of Agenda
President’s Report by Christinea Walker (year in review, goals for the future)
Vice President’s Report by Leigh Anne Stitt
Treasurer’s Report by Katheryn Shantora
Fundraising Coordinator Updates by Christine Little
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 engagement settings. To view Vivians amazing work, please click on the link below to download. Thank you Vivian for your amazing talent and dedication.
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 continue to stay informed. With Arlena’s help, we have been able to send out a newsletter each quarter meaning families and supporters are gathering up-to-date information about what is happening with the society and ways they can get involved. Thank you Arlena for taking the time out of your busy schedule to support RSSBC!
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 RSSBC but she has always been a supporter, attending every meeting, every fundraiser and offered emotional support to all those that she met. In 2019 RSSBC was elated to hear that she was able to take on a larger role. We know we are in great hands having Katheryn as treasurer of the society. Thank you for being such great support for all.
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 secured. As a fundraising coordinator Christine has learned a lot this past year and a half and we hope to continue to work with her in the future. Thank you for all your time and efforts Christine.
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 spent a year creating and building the new Rett Syndrome BC website. He continues blessing RSSBC with his skill set and meets regularly with the team to ensure the website continues to run effectively and has current information. Thank you so much for all you do Karl! We are forever grateful.
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 light up around BC and received 15 proclamations. She also wrote feature stories about those with Rett Syndrome that were posted to our social media outlets in October which was seen by over four and half thousand people. Alice’s self-driven personality has been a huge assist and we look forward to continuing to work with her.
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 a large company business background that has benefited the society time and time again. Thank you, we are forever indebted to you, Leigh Anne.
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 up to date. Thank you for all you do Rachel!
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 marketing and newsletter writer and later became secretary on the board.
Tiffany has been a huge asset to the RSSBC team and all the families that we serve.
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 we serve.
Keep up to date by following our Instagram account at @ rett_syndrome_bc
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 for church, seat your child far away from a well-meaning relative who’ll try and force unfamiliar foods on him, or pair your kiddo up with an understanding cousin who’ll help her navigate the kids’ table. Then relax and enjoy making memories with your family!
Keep up to date by following our Instagram account @rett_syndrome_bc
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 with toys instead. Consider fidget toys, bubbles, Silly Putty, pencil grips, novelty erasers, toy cars, ear buds, balls, money, and Lego figurines. If you’re giving a treat to a child on a special diet, be sure to run any food items by mom and dad first to make sure it’s not on the restricted list.
Keep up to date by following our Instagram account @rett_syndrome_bc
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 an Easter egg hunt. While it may be tempting to hover nearby and help your child find his eggs, there are ways to adapt your hunt so he can be successful on his own. The first step is to lay out the rules: Everyone stops after finding X number of eggs, which gives slower children more time to look for their eggs without fear of them all being found. Or try assigning each child their own colour to find. Talking eggs give an additional auditory clue and are also great for kids with visual impairments. One of my favourite home visit activities this time of year is an egg hunt inside a sensory bin (usually rice). Because it’s one-on-one, each child has as much time as they want to find their eggs and it’s an activity that is easily adapted to each child’s needs.
Keep up to date by following our Instagram account @rett_syndrome_bc
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 feel a little itchy to a typical child, but to a child with sensory issues who over-registers sensations, it could very well be unbearable. You might be able to compromise by letting her wear a favourite t-shirt underneath or letting him wear his Superman socks. But if not, you might just have to let it go. If you just can’t bear to let her wear her beloved sweatpants today, at least pick out an outfit that’s soft and comfortable. Make it special by choosing holiday colours or adding holiday accessories.
Keep up to date by following our Instagram account @rett_syndrome_bc
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 friend supporting a family with a child with Rett Syndrome, are seeking volunteer opportunities or you simply just want to learn about it.
Whatever the reason we thank you for taking the time to learn more about Rett Syndrome. This disorder is complex and changes lives but we have seen some amazing resilience grown from it. Not just in the children affected by it but rather their entire communities, including parents, siblings, relatives, friends, teachers, therapists and so many more. Each child is unique and special just like all of us. Their journeys may look different and take a few extra twists and turns but all any parent wants is for their child to be loved and included within their own communities. If you are reading this website and letter, you are part of that community for someone very special regardless of whether you know them yet or not.
Our website was built to allow anyone to access information about Rett Syndrome, our society and resources that families can take advantage of. If after looking on our website you still have questions we encourage anyone to contact us. We would be happy to speak to anyone interested in Rett Syndrome.
💜 Raising Awareness on Global News: RSSBC President, Shares the Message of Hope for Rett Syndrome 💜
This week, Christinea Walker, President of the Rett Syndrome Society of British Columbia (RSSBC), appeared on Global BC News to raise awareness for Rett Syndrome Awareness Month and to shine a light on the strength and resilience of families across Canada who live with this rare neurological disorder every day.
During the interview, Christinea spoke about what Rett Syndrome is — a rare and complex condition that primarily affects girls, robbing them of speech, mobility, and independence, but never their incredible spirit. She also discussed the importance of early diagnosis, support services, and ongoing advocacy for access to life-changing treatments.
“Every day, families face challenges most people can’t imagine,” Christinea shared. “But through awareness, compassion, and community, we can create real change — we can give hope.”
Christinea also highlighted the work RSSBC and other provincial associations are doing through the Canadian Rett Syndrome Coalition — a united effort across provinces including Manitoba, Alberta, Saskatchewan, Ontario, Quebec, and British Columbia. Together, they are advocating for improved access to drug therapies.
Throughout October, RSSBC continues its awareness efforts through campaigns like Light Canada Purple for Rett Syndrome — where landmarks and homes across the country glow purple on October 29th in solidarity with the Rett community. These campaigns help bring visibility to a condition that is often misunderstood and overlooked, while reminding families that they are not alone.
Christinea’s appearance on Global BC is another step forward in building awareness, understanding, and compassion. It’s a reminder that every voice, every story, and every light matters.
Together, we can continue to shine a light on Rett Syndrome and bring hope to families across Canada.
💜 Teaching Understanding: RSSBC’s Rett Syndrome Educational Video for Students
At the Rett Syndrome Society of British Columbia (RSSBC), one of our biggest goals is to help children and educators better understand Rett Syndrome — what it is, how it affects those who live with it, and most importantly, how we can all connect and include one another with kindness and understanding.
That’s why we’re so proud to share the Rett Syndrome Educational Video for Students — a fun, easy-to-understand, and heartfelt resource created to bring awareness into classrooms across Canada. 🎥💜
🌟 What the Video Teaches
This short video introduces students to the world of Rett Syndrome in a way that’s positive, age-appropriate, and empowering.
Students will learn that: 💜 Rett Syndrome is a rare neurological disorder that mostly affects girls. 💜 People with Rett Syndrome may lose the ability to walk, talk, or use their hands the way they used to — but they still understand everything going on around them. 💜 Communication might look different — through eye gaze, smiles, laughter, or assistive technology — but it’s just as real and meaningful. 💜 Most importantly, kids with Rett Syndrome want the same things every child does: friendship, fun, and a chance to belong.
Through real stories, engaging visuals, and relatable examples, the video helps students see that inclusion isn’t about doing something extra — it’s about making space for everyone to shine. 🌈
💜 Why This Matters
When children understand differences, they build empathy. When empathy grows, inclusion follows.
For students who have a classmate or friend with Rett Syndrome, this video can help remove fear or confusion and replace it with confidence, kindness, and curiosity. It opens the door for meaningful connections — and helps foster a school culture where every child feels valued and seen.
By sharing this educational tool, RSSBC hopes to create ripple effects of understanding throughout classrooms, communities, and beyond.
💻 How to Access the Video
The Rett Syndrome Educational Video for Students is freely available to teachers, schools, and families who wish to use it for awareness and inclusion activities.
Education is one of the most powerful tools we have to build understanding and inclusion. Whether you’re a teacher, a parent, or a student — you can help by sharing this video, talking about Rett Syndrome, and celebrating the beauty of diversity in every classroom.
Because every child deserves to feel seen, heard, and included — and that’s pRETTy awesome! 💜
Canadian Rett Syndrome Coalition Demands Justified Reconsideration Under Time-Limited Access Framework
Rett Syndrome Families Outraged by Canada’s Drug Agency Denial of DAYBUE®(trofinetide)
Canadian Rett Syndrome Coalition Demands Justified Reconsideration Under Time-Limited Access Framework
TORONTO, ON – October 21, 2025 – The Canadian Rett Syndrome Coalition – comprising the Rett Syndrome Society of British Columbia (RSSBC), Rett Syndrome Society of Alberta (RSSA), Saskatchewan Rett Syndrome Association (SRSA), Manitoba Rett Syndrome Association (MRSA), Ontario Rett Syndrome Association of Canada (ORSA), and the Association Quebecoise du syndrome de Rett (ASQR) – together with the broader Canadian Rett syndrome community and with the support of the Canadian Organization for Rare Disorders (CORD) expressed deep outrage and disbelief at the Canada Drug Agency’s (CDA, formerly CADTH) decision not to reimburse DAYBUE® (trofinetide) – the first and only approved therapy for Rett syndrome.
Rett syndrome is a devastating rare genetic neurological disorder that almost exclusively affects girls; even rarer in males, causing the loss of speech, mobility, and independence, and requiring lifelong 24-hour care., Between 600 and 900 Canadian families live with this condition. Health Canada approved DAYBUE in October 2024 under Priority Review, citing statistically significant improvements in communication, motor function, and quality of life.
Yet in August 2025, CDA’s final recommendation rejected public coverage, ignoring the regulator’s scientific conclusion that DAYBUE offers meaningful clinical benefit – a decision that leaves hundreds of Canadian children and adults with no access to the only available treatment and no hope for improvement.
“This decision is devastating and indefensible,” said Durhane Wong-Rieger, President & CEO of CORD. “Prior to the formalized Time-Limited reimbursement pathway, CDA recommended conditional reimbursement or managed access plans for drugs with data uncertainty, such as spinal muscular atrophy (SMA), retinal blindness, and Friedreich’s Ataxia. In their review, the Agency accepted that Rett syndrome meets the same criteria but inexplicably refused to apply the same policy applied in similar situations.”
Letter and Reconsideration Proposal Submitted
CORD and the Canadian Rett Syndrome Coalition have formally submitted a letter to the CDA requesting an unprecedented, but fully justified reconsideration of the DAYBUE reimbursement recommendation, accompanied by a Time-Limited Managed-Access (TLMA) proposal – a detailed framework showing how other rare disease drugs with uncertain data have received conditional funding.
The TLMA proposal cites precedents where CDA recommended “reimburse with conditions” for rare disorders, including:
Zolgensma (SMA) – reimbursed with strict eligibility and follow-up rules;
Luxturna (RPE65 retinal dystrophy) – accepted a disease-specific functional scale; and
Epidiolex (TSC seizures) – approved with caregiver-reported outcomes central to deliberations.
Each case mirrors DAYBUE: short trials, small samples, non-traditional endpoints — but clinically meaningful improvements in devastating, untreatable diseases.
CDA’s Own Findings Justify Conditional Access
In its recommendation, CDA acknowledged that:
Rett syndrome meets the “significant unmet need” criteria allowing for evidence uncertainty;
DAYBUE produced statistically significant improvements in core Rett outcomes (RSBQ and CGI-I);
Side effects were manageable; and
Post-market data collection is critical to resolve residual uncertainty.
The patient letter urges CDA to convert its negative recommendation into a two-year, time-limited managed-access listing, requiring:
specialist prescribing and tight eligibility (mirroring the pivotal trial);
HRQoL and function data at 6-, 12-, and 24-month intervals;
continuation/stop rules; and
outcomes-based pricing agreements.
Call to Action
The Canadian Rett Syndrome Coalition is calling on the CDA and all provincial/territorial drug plans to uphold Canada’s commitments to rare disease patients and equity in access:
“We will not accept bureaucratic indifference when individuals with Rett syndrome are being denied the only therapy proven to improve their lives,” said Wong-Rieger. “A time-limited, managed-access listing is the balanced, evidence-based, and humane solution CDA’s own policies permit. We urge CDA to do the right thing – reconsider and reopen access now.”
Media Contacts:
For Canadian Rett Syndrome Coalition:
Sabrina Millson, B.Ed, CCRP, CCRA
President, Ontario Rett Syndrome Association of Canada
This October, communities across British Columbia—and across Canada—will be coming together to shine a light on Rett Syndrome Awareness Month. Each year, landmarks and public spaces glow purple to honor those living with Rett Syndrome and to raise awareness nationwide.
We’re proud to share that several incredible locations in B.C. have already confirmed their participation in Light Canada Purple 2025:
✨ Canada Place, Vancouver ✨ Vancouver Convention Centre ✨ B.C. Legislative Assembly – Ceremonial Entrance, Front & Back Fountain ✨ Confederation Garden Park Fountain and Waterfall ✨ Port Coquitlam City Hall
And that’s just the beginning! Many more sites across the province are still to be confirmed.
Across the country, more landmarks will be glowing purple, including: 🌊 Niagara Falls, Ontario 🌟 Manitoba Sign, Winnipeg 🌉 High Level Bridge, Lethbridge, Alberta 🏟️ SaskTel Centre, Saskatchewan
Together, these glowing lights symbolize hope, awareness, and unity for the Rett Syndrome community in Canada.
How You Can Join In
💜 Visit a landmark in your area that’s lit purple. 📸 Take a photo and share it online to spread awareness. 📲 Don’t forget to tag your posts with: #RSSBC #LightCanadaPurple #RettSyndromeAwareness
Your photos and shares help shine an even brighter light on Rett Syndrome, creating conversations and connections across Canada.
This October, let’s make sure the whole country knows just how strong and united the Rett Syndrome community is. Together, we can turn Canada purple!
We’re thrilled to announce that the pRETTy Awesome Campaign is back for 2025! This annual initiative is one of our favorite ways to raise awareness for Rett Syndrome, bring our community together, and show support not only in British Columbia but across Canada.
This year, we want to make sure everyone has a chance to take part—but quantities are extremely limited. If you’d like to join in, please place your order right away to avoid missing out.
By wearing and sharing your pRETTy Awesome gear throughout October—Rett Syndrome Awareness Month—you’re helping spread knowledge, build community, and shine a light on families across B.C. who are affected by Rett Syndrome. Every photo, every conversation, and every post makes a difference.
Share Your Photos – Spread the Word!
Once your gear arrives, we want to see your pRETTy Awesome spirit! 📸 Snap a picture of yourself, your family, or your team in your campaign gear. 🌍 Share it on social media to raise awareness. 💜 Don’t forget to tag us and use the hashtags: #RSSBC #pRETTyAwesome #RettSyndromeAwareness
Act Fast – Supplies Are Limited!
This campaign is a community favorite—and with limited supplies available this year, we encourage you to place your order as soon as possible.
Together, let’s turn October purple for Rett Syndrome Awareness Month and show just how pRETTy Awesome B.C. really is!
We’re excited to announce that RSSBC is hosting an in-person gathering at Unwin Park in Surrey—and you’re invited!
📅 Date: Saturday, September 20th 🕚 Time: 11:00 am – 3:00 pm 📍 Location: Unwin Park, 68 Avenue, Surrey, B.C.
This will be an afternoon filled with fun, connection, and community. Lunch will be provided, and the event will take place rain or shine—so come prepared to relax, enjoy, and spend time together. RSSBC will provide tents for extra shelter, but we encourage you to bring along your own chair for comfort.
Why You’ll Love Unwin Park
Unwin Park is designed with accessibility and inclusion in mind, making it the perfect space for our community to come together. The 12,000-square-foot playground features a wide range of accessible play elements, including:
We-Go-Round, Sway Fun Glider, and Omnispin Spinner
Cozy Dome, We-Saw, Netplex, Smart Play Motion, and Sensory Play Center
Rhapsody Music Collection for interactive, musical fun
Slides with transfer benches and a variety of swings
All connected by a double-wide accessible ramp system and seamless unitary surfacing
In addition to the playground, the park offers wide open fields, a large wheelchair-accessible washroom (note: no change table), and three designated accessible parking spaces.
Event Details
Rain or Shine: We’ve got tents covered, so the fun continues no matter the weather.
Lunch Provided: Please bring your own food if you have specific dietary needs.
Family Friendly: This is an event for all ages—bring the whole family!
RSVP Information
Please RSVP by September 9th so we can plan accordingly.
💜 We can’t wait to see you there and share a day of laughter, connection, and community spirit!
RSSBC is hosting its first in-person event since 2018 at Unwin Park in Surrey.
Join us for an afternoon of fun, connection and lunch. This event is rain or shine.
RSSBC will provide tents to ensure there is shelter from the elements. Simply bring your family and a chair to relax in.
The 12,000-square-foot playground includes accessible play elements such as the We-Go-Round, Sway Fun Glider, Omnispin Spinner, Cozy Dome, We-Saw, Netplex, Smart Play Motion, Sensory Play Center, Rhapsody Music Collection, slides with transfer benches, and a variety of swings, all connected by a double wide accessible ramp system and unitary surfacing with seamless transitions.
The park is equipped with wide open field areas to gather, a large wheelchair-accessible washroom ( no change table) and three accessible parking spaces.
Rain or Shine
Bring the whole family!
Unwin Park, 68 Avenue, Surrey B.C.
September 21st, 11 am-3 pm
Lunch will be provided (those with dietary restrictions should bring their own foods.)
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 info@rettbc.ca so that you can participate!
As a society, we would love to hear your opinions, thoughts, feelings, and concerns. As well, we do need at least 5 members to make proxy and to ensure that we are representing and encompassing the experiences of those we serve each year.
Bonus: if you attend the entire meeting, you will automatically be entered into an Amazon gift card draw.
