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2025 COMMITTEE REPORTS
COMMITTEE REPORTS
aNNUAL GENERAL MEETING aUG 27, 2025

PRESIDENT'S REPORT

Dear Members, Families, Partners, and Friends,
Each year, as we gather for the Annual General Meeting, we are offered a moment to pause and reflect on the collective strength, resilience, and progress that define the Ontario Rett Syndrome Association of Canada. This year, however, feels especially significant. I am honoured to share a year shaped by significant milestones, dedicated advocacy, growing international influence, and a strengthened focus on visibility, transparency, and collaboration.
After years of unwavering advocacy and thoughtful planning, ORSA Canada has been selected to host the 10th Rett Syndrome World Congress, an esteemed international gathering of clinicians, researchers, advocates, and families. This landmark event will take place October 11 to 14, 2028, at the Hilton Hotel in downtown Toronto, Ontario, Canada. It will be a powerful celebration of scientific innovation, global unity, lived experience, and an opportunity to spotlight Canada’s leadership in the global Rett syndrome community. We are deeply grateful for this honour and are excited to foster an inclusive, accessible space for learning, sharing, and meaningful connections. Our sincere thanks to the Rett Syndrome World Congress Selection Committee for their time, expertise, and unwavering dedication in supporting this important event.
To support this vision and help ease the financial burden of attending for all families, we have restructured our signature “Run 4 Rett” event and added a Coast-to-Coast Challenge. This virtual campaign unites Canadians from across the country to join our team and raise funds together. This national initiative is more than a fundraiser. It is a powerful symbol of solidarity and shared purpose, helping to make the World Congress more accessible to all who wish to attend. By going the distance together, we are not only raising awareness and critical funds; but we are also strengthening the foundation for a truly inclusive and representative event on home soil. A special thanks to our title sponsor, Acadia Pharmaceuticals and supporting sponsor, Taysha Gene Therapies. 
We are proud to be Canadian, and everything we have built over the last 34 years has led us to this moment. With that in mind, a refreshed brand identity was the next logical step in strengthening ORSA’s global recognition. It visually represents who we are, what we’ve accomplished, and where we are heading as we grow our presence internationally.
But our work did not begin, or end, there. ORSA Canada remains deeply committed to amplifying the voices of families from coast to coast, especially for those in provinces without their own local association. We recognize the urgent need for equitable access to information, resources, and support, and this year we took bold, strategic steps to uphold that promise.
We’ve introduced several new initiatives:
  • A complete redesign of the ORSA Canada website, making it more accessible, informative, and user-friendly. The new platform reflects our national reach and provides streamlined access to vital resources for families, healthcare providers, and researchers.
  • Moments That Matter, a heartfelt storytelling campaign, shared personal milestones and experiences from Rett families. These stories are powerful tools for awareness, connection, and education.
  • Rett Rounds, our new virtual education series sponsored by Acadia Pharmaceuticals, brings together families, clinicians, and researchers to exchange knowledge, ask questions, and stay informed about the latest in care and research.
  • A newly launched monthly e-newsletter ensures consistent and transparent communication with our community, delivering research updates, advocacy news, event details, and helpful resources.
We are proud of the many contributions ORSA Canada has made over the years, and the important role our ongoing efforts continue to play in shaping the Canadian Rett landscape:
  • Through our Hope Fund Grant program, we have invested over $1 million dollars into Canadian Rett syndrome research, supporting scientific discovery and expanding the boundaries of what is possible.
  • We have successfully brought clinical trials to Canada, giving families access to investigational therapies previously unavailable in this country.
  • We have actively advocated with Health Canada and the Canadian Drug Agency, including formal letters of support for treatments, ensuring Canadian families are not left behind in therapeutic progress.
  • We have built strong relationships with pharmaceutical partners, contributing to meaningful research initiatives such as, Anavex’s Vineland scale modification, and sharing real-world data for Taysha’s caregiver manuscript, embedding Canadian perspectives in global care planning.
  • We have hosted numerous educational conferences, webinars, and regional meetings, offering high-quality learning experiences to families, educators, and clinicians, both in person and online.
  • We continue to promote and support participation in the Canadian Rett Syndrome biorepository, a legacy-driven initiative that deepens scientific understanding of Rett syndrome.
  • We have led and sustained the Canadian Rett Syndrome Registry, a vital national effort that captures patient data and enables research participation, ensuring Canada is well represented in global advancements.
  • We expanded community engagement opportunities, creating spaces for families to gather, learn, and build lasting connections across the country.
Finally, I’m proud to share that ORSA Canada remains an active member of several key alliances, including the WOLF Pack (World Organization Leaders Forum for Rett syndrome), Neurological Health Charities Canada (NHCC), the Canadian Organization for Rare Disorders (CORD), and the Province of Ontario Neurodevelopmental Disorders (POND) Network. Through these collaborations, we exchange strategies, align advocacy efforts, and support one another because progress is faster, stronger, and more sustainable when we move forward together.
In closing, I want to thank each of you for the energy, trust, and hope you bring to this organization. And to the Board of Directors, your vision, commitment, and tireless service make our mission possible. Thank you for your continued support and dedication. At this time, we also bid farewell to, Steve Miguel, who is stepping down from the Board. His talent and creativity will be deeply missed. We wish him all the best and hope to welcome him back to the board in the future.
For more information regarding committee reports, visit our website: https://rett.ca/2025-committee-reports/
With gratitude,
Sabrina Millson, President
ORSA Canada
 
 

Guest Speaker Claude Buda, President RSAA
Communications COMMITTEE

Communications Committee Report Sept 2024-2025 

Chair-Steve Miguel and Sabrina Millson 

New Website We recently launched a new website that is designed to be the main place for information, updates, and resources. It is easier to use, looks fresh, and works well on both computers and mobile devices. Some of the new features include: 

  • A news section for regular updates 
  • An event calendar with easy registration 
  • A resource library for important documents and tools 
  • Dedicated areas to highlight advocacy work, research updates, and contact info 

Commitment to Transparency and Communication One of our priorities is making sure communication is clear and open. The website, along with all of our other efforts, reflects our promise to keep members and families informed and to share updates in a timely way. 

Monthly Newsletters We have started sending a monthly newsletter directly to inboxes. This helps keep everyone up to date on events, research news, advocacy efforts, and opportunities to get involved. 

Press Releases The committee has also begun sending press releases for important announcements. This helps us share our message with a wider audience and ensures that media, partners, and the public know what we are working on. 

Social Media Engagement Our social media platforms continue to grow and have become an important way to connect with people. We use these channels to share news, highlight community stories, recognize partners, and raise awareness. The engagement we are seeing shows that this is a valuable tool for reaching more people and building stronger connections. 

Marketing and Outreach We are also putting more focus on marketing to promote events, fundraising campaigns, and advocacy priorities. This includes digital campaigns, branded materials, and outreach efforts to bring more visibility to our work and encourage participation. 

Fundraising COMMITTEE

ORSA CANADA FUNDRAISING COMMITTEE REPORT  

August 27, 2025 

Committee Chair: Jodi Dwyer  

Current Members: Sherry Lawrence, Amy Whittard  

ORSA Signature Events:  

  • Run4Rett 2024 – $28,135.00 
  • 20th Annual Rett Classic 2025 – $11,482.00 

3rd Party Events:  

  • Ref4Rett – hosted by the Morton family – $6,100.00 received this fiscal year  
  • Revs4Rett August 2024 – hosted annually by the Millson family – $5,532.00 
  • “36 Exposures” October 2024 – hosted annually by Michelle Quance – $4,040.00 
  • AdBands May 2025 – hosted annually by Michelle Quance – Amount TBA  

Upcoming ORSA events: 

  • Run4Rett 2025 taking place in-person on Sunday, September 21st, 2025 at the Richvale Community Center, Richmond Hill  
  • This years Run4Rett will have a virtual Coast to Coast run taking place from    September 13 – October 31, 2025 
  • 21st Annual Rett Classic is tentatively scheduled for Sunday, June 7th, 2026  
Education COMMITTEE

Committee Report: Education Committee Sept 2024- Aug 2025 

Chairs-Sherry Lawerence & Sabrina Millson 

  1. Flash Camp

Flash Camp was a tremendous success, bringing together families and caregivers for a weekend of connection, education, and fun. The event focused on accessible care strategies, communication supports, and caregiver wellness. Attendees shared overwhelmingly positive feedback, with many requesting a return in 2026. 

Highlights: 

  • Workshops led by teachers, speech-language pathologists (SLPs), and counsellors 
  • Interactive sessions designed for siblings and peer engagement 
  • 100% satisfaction in post-event feedback, with strong interest in future sessions 
  1. Rett Rounds

Rett Rounds is a new virtual education series launched by ORSA Canada and sponsored by Acadia Pharma to enhance knowledge sharing among clinicians, educators, and caregivers. Each session includes an in-depth focus on Rett-specific care topics and offers an opportunity for real-time Q&A with subject matter experts. 

Progress to Date: 

  • 1 session completed: Understanding and Managing Movement Disorders 
  • Future topics include: 
  • GI and Nutrition Management 
  • Seizures  
  • Quality of Life 
  • Puberty and Hormonal Changes 
  • Transitioning to Adulthood 

Recorded sessions are archived and accessible to families and professionals through ORSA Canada’s YouTube channel. 

  1. Rett Syndrome World Congress – Toronto 2028

ORSA Canada continues to make progress toward hosting the 2028 Rett Syndrome World Congress in Toronto. A formal proposal has been submitted, and early international feedback has been encouraging. In preparation, the committee is focused on building partnerships and raising both awareness and funds through initiatives like the Run 4 Rett: Coast to Coast Challenge. 

Key Developments: 

  • A dedicated Congress Planning Subcommittee has been formed 
  • Partnerships are being explored with global Rett organizations 
  • The Coast to Coast virtual walk has been launched as part of a broader pre-conference campaign to increase visibility and generate support 
Scientific COMMITTEE

Scientific Committee Report Sept 2024-Aug 2025 

Chair-Sabrina Millson 

Highlights & Activities 

  • Global Representation 
    ORSA Canada proudly represented the Canadian Rett community at the 9th Rett Syndrome World Congress, hosted by the Rett Syndrome Association of Australia in October 2025. Participation at this premier global event helped strengthen international networks and set the stage for future collaboration. 
  • IRSF Scientific Meeting (June 2025) 
    The scientific committee attended the International Rett Syndrome Foundation Scientific Meeting, where we furthered relationships with leading researchers and global advocacy organizations. A highlight was the official announcement that ORSA Canada will host the 10th Rett Syndrome World Congress in Toronto in 2028, shared with an audience of researchers and clinicians. 
  • Partnership with Anavex Life Sciences 
    In partnership with Anavex, the committee supported the enhancement of the Vineland Assessment Questionnaire, contributing to a poster presentation at the IRSF meeting and an upcoming peer-reviewed publication. 
  • Access to Daybue in Canada 
    We collaborated with Acadia Pharmaceuticals and the Canadian Organization for Rare Disorders (CORD) to advocate for access to Daybue. This included submitting two formal proposals to the Canadian Drug Agency, voicing the needs and experiences of Canadian families impacted by Rett syndrome. 
  • Canadian Rett Syndrome Registry Promotion 
    Awareness and engagement with the Canadian Rett Syndrome Registry through targeted digital campaigns, clinic outreach, and informational mailings. These efforts aim to expand the registry’s reach and ensure Canada’s inclusion in emerging research opportunities. 
  • Taysha Gene Therapies Collaboration 
    In collaboration with Taysha Gene Therapies, we co-authored a soon-to-be-published manuscript in Developmental Medicine & Child Neurology, highlighting caregiver experiences and defining what meaningful outcomes look like in the treatment of Rett syndrome. 
  • Hope Fund Update 
    While no research grants was awarded from the Hope Fund during this cycle, the program remains a strategic priority. We are actively building the financial foundation necessary to support future grant opportunities and Canadian-led research. 
  • 10th World Congress Announcement 
    The most exciting milestone of the year: ORSA Canada was selected to host the 10th Rett Syndrome World Congress in Toronto in 2028. The announcement followed by a global “Save the Date” campaign across social media, newsletters, and direct outreach to Rett associations worldwide and scientific committee. 

 

Outreach COMMITTEE

Outreach Committee Sept 2024- Aug 2025 

Chair- Amy Whittard 

Activities:  

– Continuing to contact new families when they sign up for membership 

– Continuing to respond to phone call/email inquiries 

– Answered 19 emails/voicemails regarding questions or info families or caregivers were inquiring about· 

– Number of new members from August 2024-2025 is 40   

– 2 bereavement packages sent out 

– 15 new family packages sent out (only sent out to Canadian families) 

– Started a Moments That Matter campaign in January 2025. We ask families to share a special moment (big or small) that their family and/or Rett child has experienced. Showing others that every moment in our lives matter! We post these to our social media platforms to showcase inspiring stories from our Rett communities. To date we have had 10 families share a special moment. 

– ORSA brought back a monthly newsletter in April 2025 to keep our members informed with recent news, events and fundraisers. 

  • ORSA hosted a Butterfly Rebrand Social Event May 3rd, 2025 to bring old and new Rett families together in person. It was a very successful event with 60 attendees (11 families?)