The Story Behind pRETTy Awesome

In 2024, two mothers serving on the Manitoba Rett Syndrome Association board began talking about October and what we could do differently for Rett Syndrome Awareness Month.

Each October, raising awareness often meant explaining the medical side of Rett syndrome, including what it is, how rare it is and the many challenges it can bring. Those facts are important, but they are only one part of the story.

We wanted people to understand Rett syndrome while also seeing beyond the medical terms and the diagnosis. At the heart of pRETTy Awesome is a simple message: every individual is a person first and a diagnosis second. They are intelligent, funny, sassy, strong, determined and full of personality. There is so much more to each of them.

That conversation became the beginning of the pRETTy Awesome initiative.

We began playing with words such as pRETTy Awesome, pRETTy Smart and other positive messages with RETT highlighted within them. The idea was to make people notice the word Rett while celebrating the individuals behind it.

At the time, Canada did not have an approved treatment for Rett syndrome. Just ten days after pRETTy Awesome officially launched on October 1, 2024, Health Canada approved DAYBUE, the first medication in Canada specifically for the treatment of Rett syndrome.

It was an important and hopeful milestone for our community and another reminder of why awareness, advocacy and continued research matter so much.

With sponsorship from Acadia Pharmaceuticals (Canada) Inc. and an incredible amount of help from the team at GCI Canada, we were able to bring the idea to life.

In the first year, we created and distributed a large number of pRETTy Awesome shirts and stickers. Although the initiative began here in Manitoba, Rett syndrome associations in British Columbia, Alberta and Saskatchewan joined us for the initial launch.

Seeing the shirts and stickers being shared was incredibly meaningful. Each one helped put the words Rett syndrome in front of someone who may never have seen or heard them before. They also showed individuals and families affected by Rett syndrome that others were standing beside them and helping to raise awareness.

In the second year, the initiative grew even further. Quebec joined us, French language shirts were added and pRETTy Awesome reached families in Germany. We distributed more shirts and stickers and added educational materials for schools.

During that time, the provincial Rett syndrome groups also worked together to create an educational video. Although the video is not officially part of pRETTy Awesome, we include it in our pRETTy Awesome awareness packages. It gives families and schools another way to introduce Rett syndrome to children and help build understanding.

This year, we are switching things up while continuing to build on everything we have already created.

We now have an assortment of pRETTy Awesome pins, each attached to either a large or small awareness card, ready to be handed out and shared. The pins and cards are available in both English and French, and stickers continue to be part of the initiative.

We may be even more excited about the pins than we were about the shirts. A pin may be small, but it can be worn on a jacket, bag or lanyard throughout the year. It can travel with someone and begin a conversation wherever it goes.

MRSA’s message is: Wear a Pin. Share a Pin. Start a Conversation. We hope people will wear a pin, share one with someone else and talk about why Rett syndrome awareness matters.

Each year, we are not starting over. We are adding another piece. The pRETTy Awesome initiative now includes shirts, stickers, school resources, awareness cards and pins, all helping us share the same message in different ways.

We are incredibly grateful to Acadia Pharmaceuticals (Canada) Inc. for continuing to sponsor this initiative, to the team at GCI Canada for the time, work and care they have put into making it happen, and to the Rett syndrome groups across Canada that have joined us and helped share pRETTy Awesome in their communities.

What began as a conversation between two Manitoba mothers who wanted people to know about Rett syndrome while also seeing the individuals behind the diagnosis is now in its third year and continues to grow.

For the Manitoba Rett Syndrome Association, pRETTy Awesome is about every individual living with Rett syndrome. It is about making sure the words Rett syndrome are seen, remembered and understood while celebrating each person for all that they are.

Every person who wears a shirt or pin, displays a sticker, shares a card or brings these resources into a school helps us do that.

Want to take part? Contact the Manitoba Rett Syndrome Association or the Rett syndrome association in your province for a pRETTy Awesome shirt, sticker or pin. There are seven different pins to collect!

And that truly is pRETTy Awesome.