August 2025 to August 2026

As I reflect on the past year, I am filled with gratitude and optimism. ORSA Canada continues to
grow because of the dedication of our families, volunteers, donors, sponsors, healthcare
professionals, researchers, and advocates. Together, we are building an organization that not
only supports families today but also helps shape a better future for everyone living with Rett
syndrome.

When I look back on this year, I don’t just see meetings, events, or initiatives. I see moments
that matter. Moments that strengthened our community, inspired hope, and reminded us why
ORSA Canada exists.

Our Board remained focused on three priorities: strengthening ORSA Canada, building
meaningful connections, and creating momentum toward better care, improved access to
treatments, and a brighter future.

Strengthening ORSA Canada

One of those moments was celebrating 35 years of ORSA Canada. Bringing families together at

the Toronto Zoo and hearing messages from our past presidents reminded us that every
milestone has been built by people who believed we could do more for families living with Rett
syndrome. We honour that legacy by continuing to move the organization forward.
Another important moment was launching our official ORSA Canada merchandise and
continuing to expand educational resources through Rett Rounds. Every webinar, every
conversation, and every resource shared helps families feel more informed and connected.
Not every moment was a success, and that is part of growing as an organization. Our Spring
Fling Auction received little participation, reminding us that our community values meaningful,
in person experiences. Lessons like these help shape stronger opportunities in the future.

Building Connections

Perhaps the most inspiring moment of the year was seeing Canadians from coast to coast take
part in our first Run 4 Rett Coast to Coast Challenge. Families who had never met walked
alongside one another in spirit, united by a common purpose. It showed that distance does not
divide our community. It strengthens it.

We also celebrated the people behind the progress. Through Meet a Rett Champion, we
recognized advocates from around the world whose passion continues to inspire change.
During Rett Syndrome Awareness Month, our I Can Campaign shifted the conversation from
limitations to possibilities, celebrating the abilities, strengths, and individuality of those living
with Rett syndrome.

Our community also continued to grow through collaboration. Whether attending national and
international conferences, working alongside organizations around the world, or preparing to
welcome the world to Toronto in 2028, each new partnership strengthens ORSA Canada’s voice
and expands our impact.

These moments would not have been possible without the generosity of our families, donors,
supporters and sponsors, including Acadia Pharmaceuticals and Taysha Gene Therapies. Thank
you for believing in our mission and helping transform ideas into action.

Creating Momentum

Some of the most important work happens quietly, behind the scenes.
Throughout the year, ORSA Canada continued advocating for equitable access to approved
therapies, including a reimbursement pathway for Daybue. Every meeting, every letter, every
conversation, and every signature on our petition represents another step toward ensuring
Canadian families have access to the treatments they deserve.

As we prepare to host the 10th Rett Syndrome World Congress in Toronto in 2028, we are
doing more than planning a conference. We are building relationships, encouraging scientific
collaboration, and creating opportunities that will have a lasting impact on families in Canada
and around the world. Everyone is invited!

On behalf of the Board of Directors, thank you to every member, volunteer, donor, sponsor,
healthcare professional, researcher, and family who continue to believe in our mission.
As we look ahead, our purpose remains clear. We will continue building connections,
advocating for change, advancing education, and creating moments that matter for every
family living with Rett syndrome.

Thank you for your trust and support. It is an honour and a privilege to serve as President of
ORSA Canada.

Sincerely,
Sabrina Millson, President