💜 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.
