Ontario Rett Syndrome Association

🌍 This October: World Congress 101

Have you ever wondered what happens at a Rett Syndrome World Congress? Who attends? Why do people travel from around the world to be there? And why is it such an important event for families, researchers, clinicians, and advocates?

Throughout Rett Syndrome Awareness Month, we'll answer these questions and more in our World Congress 101 series.

Each post will take you behind the scenes, introducing the people, the science, the connections, and the experiences that make the World Congress unlike any other event in the Rett community.

Whether you're new to Rett syndrome or have been part of the community for years, there's something to discover.

📍 Follow our page and join us throughout October as we begin the journey to the 10th Rett Syndrome World Congress in Toronto, Canada. One post at a time, we'll explore what makes this global gathering so meaningful—and why you won't want to miss it.

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💜 WHY RETT SYNDROME AWARENESS MONTH SHOULD ALSO MAKE US CARE ABOUT THE WORLD RETT SYNDROME CONGRESS

A Parent-Researcher Reflection on Alex, Science, Families, and Why the Same Room Matters

During Rett Syndrome Awareness Month, we talk a lot about purple ribbons.

We talk about what Rett syndrome is.

We introduce our daughters and sons.

We explain regression, seizures, apraxia, communication, breathing, mobility, GI problems, scoliosis, sleep, AAC, adulthood, and the thousand other things families learn because somebody we love forced us to become students of a condition we never expected to know.

But awareness should also make us ask another question:

Where does all of this knowledge actually come together?

One answer is the Rett Syndrome World Congress.

And I think families should care about it even if they never attend one.

The 10th Rett Syndrome World Congress is scheduled for October 11–14, 2028 in Toronto, Ontario, Canada, hosted by the Ontario Rett Syndrome Association of Canada. The organizers describe it as a global gathering intended to bring together experts, advocates, and families to share knowledge, advance research, and strengthen support for people affected by Rett syndrome. More detailed planning is still to come.

That sounds like conference language.

But as Alex's dad, I think it means something much bigger.

Because Rett syndrome is too complicated for one room full of scientists.

Too complicated for one neurology clinic.

Too complicated for one country.

Too complicated for one treatment company.

And definitely too complicated to understand without the people actually living it.

The World Congress matters because, at its best, it puts people who normally live in completely different worlds into the same conversation.

The basic scientist studying MECP2.

The neurologist treating seizures.

The clinician thinking about breathing or scoliosis.

The communication specialist working with eye gaze.

The researcher designing a clinical trial.

The company trying to develop a therapy.

The parent who knows what a bad night actually looks like.

The sibling who understands what Rett does to a family.

And most importantly, the person living with Rett syndrome.

That intersection matters to me.

Because one of the dangers in rare-disease research is that every group can become very good at studying its own piece.

The scientist sees a pathway.

The neurologist sees seizures.

The orthopedic surgeon sees a spine.

The therapist sees movement.

The trial designer sees an outcome measure.

The parent sees a daughter.

And Alex lives in all of those realities at the same time.

That is why the World Congress is more than another medical meeting.

The previous, 9th World Rett Syndrome Congress on Australia's Gold Coast in October 2024, showed how broad that conversation can be. Its program included MECP2 biology, gene editing, gene-therapy data, trofinetide, EEG and biomarkers, communication and eye-gaze technology, seizures and seizure-like events, breathing and swallowing, hip and bone care, self-determination in teenagers and adults, rare-disease registries, parent perspectives, sibling voices, and a presentation from a person living with Rett syndrome herself.

Think about that for a minute.

In one international gathering, conversations can move from molecular biology...

to whether someone can communicate with her eyes...

to what a family needs at home...

to how adulthood should look...

to what researchers should measure in the next clinical trial.

That is the bridge I care about.

Because science that never reaches everyday life is incomplete.

And family experience that never reaches the people designing the science is an opportunity lost.

I have learned that repeatedly through Alex.

A researcher may ask whether a treatment changes a clinical score.

As her dad, I may be wondering:

Does she sleep better?

Is she more comfortable?

Are seizures changing?

Can she communicate more reliably?

Is her breathing different?

Does she have more energy for the people and things she enjoys?

Can we tell whether something meaningful changed in her actual life?

Those are not anti-science questions.

Those are exactly the questions that should help science become more meaningful.

And researchers need families for another reason.

Families carry longitudinal knowledge.

We know what "normal" means for our person.

We know which changes would matter.

We know what looks impressive on paper but might make very little difference at home.

We also know that Rett syndrome is not one identical experience repeated thousands of times.

One person walks.

Another does not.

One person retains some speech.

Another is nonspeaking.

One has severe epilepsy.

Another does not.

One is a young child.

Another is a woman in her forties or fifties.

And the broader MECP2-related disorder community reminds us that the molecular story itself extends beyond one traditional picture of Rett.

So when researchers decide who qualifies for a study, what outcomes count, what ages matter, or what changes are "meaningful," families and people living with these disorders need to be part of those conversations.

The World Congress can create space for that.

It also matters because Rett research is not standing still.

IRSF notes that the field has moved from the identification of MECP2 as the major genetic cause of Rett in 1999, through the Natural History Study, the first human treatment trial, the first FDA-approved Rett-specific treatment in 2023, and into current gene-therapy clinical research.

That is extraordinary progress.

But progress also requires discipline.

A conference should not become a hype machine.

A preliminary result is not a cure.

A mouse result is not a human outcome.

A biomarker is not automatically a meaningful life change.

A clinical-trial signal still needs replication, safety data, longer follow-up, and honest interpretation.

That is another reason these gatherings matter.

Researchers need places where other researchers can challenge assumptions.

Clinicians need to ask whether an idea translates into real care.

Families need enough access to understand the difference between promising and proven.

And companies need to hear directly from the community whose lives will be affected by the treatments they are developing.

That is what I hope the 10th World Congress continues to do.

Not create certainty where there isn't any.

Create conversation where there used to be silos.

And there is another reason I care.

The World Congress reminds us that Rett syndrome is global.

Alex happens to live in the United States.

But Rett syndrome does not recognize borders.

There are families in Canada.

Australia.

Europe.

Asia.

Africa.

Latin America.

Places where specialist clinics are abundant.

And places where getting a diagnosis, AAC device, seizure specialist, wheelchair, or genetic test may be extraordinarily difficult.

A global congress can expose differences in care that we sometimes forget exist.

It can also allow ideas developed in one country to travel to another.

Research collaborations can begin.

Clinical approaches can spread.

Families can realize they are not isolated.

And people who have spent years working separately may discover they were trying to solve different pieces of the same problem.

That is awareness too.

Awareness is not only teaching the public that Rett syndrome exists.

Awareness should connect the people capable of changing what happens next.

And perhaps the part I care about most as a dad is this:

The people with Rett syndrome cannot become decorations around their own conference.

Their lives are the reason the conference exists.

Their communication matters.

Their comfort matters.

Their adulthood matters.

Their families' observations matter.

The medically complex person who is harder to test matters.

The person who cannot travel matters.

The adult whose life is underrepresented in research matters.

The boy or man with an MECP2-related disorder matters.

The family that cannot afford an international conference matters.

And the people we have already lost matter too.

When the best scientists in the world gather to talk about Rett syndrome, I want Alex somewhere in the room metaphorically even if she is thousands of miles away.

Not simply as a photograph on a slide.

As the reason somebody asks:

Will this actually make her life better?

That is the question underneath everything for me.

Not:

Can we produce an impressive graph?

Not:

Can we publish another paper?

Not:

Can we generate another headline?

But:

Can what we learn help the person living this life?

That is why, during Rett Syndrome Awareness Month, I think we should pay attention to the World Rett Syndrome Congress.

The 10th Congress is still two years away.

Toronto, October 11–14, 2028.

But the journey toward it has already begun.

Between now and then, science will move.

Trials will produce data.

Questions will change.

Children will become teenagers.

Teenagers will become adults.

New families will receive diagnoses.

Some families will experience breakthroughs.

Some will experience heartbreak.

And when the global Rett community eventually meets again, I hope the conversation reflects all of them.

Researchers.

Clinicians.

Therapists.

Industry.

Advocates.

Parents.

Siblings.

Adults.

Children.

Girls and women.

Boys and men.

And above all, the actual human beings living with Rett syndrome and MECP2-related disorders.

Because when science, clinical experience, and lived experience finally sit at the same table, something important can happen.

We can stop asking only:

"What do we know about Rett syndrome?"

and start asking:

"What do we still need to know to make life better for the person in front of us?"

For me, that person is Alex.

And that is why I care.

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World Congress 101 begins with one idea:

The most important thing happening at a Rett conference is not simply information being presented.

It is worlds being connected that cannot afford to remain separate.

Families need science.

Science needs families.

Clinicians need both.

And people living with Rett syndrome need all of us to remember why the work exists in the first place.

Hope, not hype.
Evidence before assumption.
Dignity, always.

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🧡 National Day for Truth and Reconciliation 🧡

Today, we honour the survivors of residential schools, their families, and the children who never made it home. It’s a time for reflection, learning, and committing to meaningful reconciliation.

🔬 The HOPE FUND Research Grant Program is now open for 2027!

ORSA Canada is proud to support the next generation of Rett syndrome research through the HOPE FUND Research Grant Program.

For the July 2027 to June 2028 funding cycle, Canadian researchers can apply for up to $50,000 to support innovative research focused on the cause, cure, prevention, treatment, management, and understanding of Rett syndrome.

We welcome research across a range of areas, including:

🧬 Biomedical research
🩺 Clinical research
💊 Treatment development
📊 Population health and health services
🔬 Translational research
🌎 Environmental research

Whether you're an established investigator or a new researcher entering the field, we want to hear about your work and your vision for advancing Rett syndrome research.

📅 Letter of Intent deadline: December 11, 2026
📅 Full application deadline: February 12, 2027
💰 Funding: Up to $50,000
📆 Funding period: July 2027 to June 2028

Together, we can support research that brings us closer to better treatments, better care, and ultimately a cure for Rett syndrome.

Learn more and access the application materials:
https://rett.ca/hope-fund-and-grants/2

📣WHAT IS A PROCLAMATION, AND WHY DOES IT MATTER?

A proclamation is an official declaration from a municipality or government recognizing an important cause, event, or awareness period.

During Rett Syndrome Awareness Month, proclamations help put Rett syndrome on the map in communities across Canada.

Each proclamation helps:

💜 Raise awareness and understanding of Rett syndrome
💜 Recognize people living with Rett and their families
💜 Bring Rett syndrome into conversations in communities across Canada
💜 Show our community that they are seen and supported

Every city and community that recognizes Rett Syndrome Awareness Month helps our voice travel a little further.

Want to help bring Rett syndrome awareness to your community?

👉If you are interested in applying for a proclamation on behalf of ORSA Canada, please email [email protected]. We will provide you with a letter to submit to your local municipality.

Let’s put Rett syndrome on the map, one community at a time.

📣Join ORSA Canada on October 29 as we Light Canada Purple for Rett syndrome awareness.

💡 began as an ORSA Canada initiative in 2018 and has grown into a national campaign for Rett syndrome awareness.

💜Watch our video to learn how it all began, what the purple lights represent, and how you can join us in lighting Canada purple👉 https://youtu.be/978erbtiuKk