FragileX Canada

A BOLD New Future

Welcome!

Welcome to the bold new future of FragileX Canada.
With a renewed focus and an unwavering commitment, we are expanding our mission to support every aspect of life touched by Fragile X Syndrome. From advancing groundbreaking research to empowering families and building a connected community, we are driving meaningful change across Canada and beyond.

Together, we are shaping a future where possibilities are limitless, and every voice is heard.

For over 25 years, the Fragile X Research Foundation of Canada has been a trusted name in the Fragile X community, championing research and families. Along the way, we realized that research is about more than science and funding, it’s about people. It’s about listening to their stories, understanding their needs, and building connections that create lasting change. Through this journey, we’ve come to see how deeply interconnected we all are, individuals, families, researchers, advocates, community members, and professionals, each playing a vital role in driving progress.

Today, as Fragile X Canada, we honour this evolution with a name and a logo that reflect our expanded mission. The new logo represents our forward momentum, inclusivity, and the strength of a community united by hope and collaboration. It’s a visual reminder of our commitment to connecting families, empowering individuals, fostering innovation, and advocating for meaningful change.

This is the next chapter of our story, and we’re thrilled to write it together with you. The name has changed, but our dedication to supporting research and the Fragile X community remains stronger than ever.

A New Name for a Bold Future

Building Expertise. Inspiring hope and possibility.

VISION

A future where Fragile X is fully understood and supported, and where every individual and family is equipped to thrive across all stages and aspects of life.

Mission

To champion the Fragile X community through collaboration, research advancement, and advocacy for comprehensive care and support. Our mission is lead by building expertise, fostering safe spaces for open conversations, and empowering knowledge sharing across all levels of the community.

Purpose

To lead a movement where the complexities of Fragile X are met with expert understanding, collaborative solutions, and an unwavering commitment to turning challenges into opportunities for growth and empowerment.

Values

Building Expertise and Advancing Knowledge

We strive to build and share knowledge, becoming the leading source of expertise in Fragile X Syndrome. By fostering education and supporting research, we empower professionals, families, and clinicians alike with the information needed to thrive.

Innovation for a Brighter Future

We are committed to driving innovation in Fragile X research, care, and support, continuously seeking new solutions to improve the quality of life for individuals and families.

Empowering Families and Celebrating Strengths

We are dedicated to empowering families by celebrating their unique strengths and providing the support needed to confidently navigate their Fragile X journey.

Empowering Through Education and Advocacy

We provide comprehensive educational resources and
proactive advocacy to empower families, professionals,
and communities with the knowledge and tools they need to thrive.

Strength in Community and Collaboration

We believe in the strength of community and collaboration, working together to advance understanding, foster support, and create lasting change for the Fragile X community.

Creating Safe and Inclusive Spaces

We are committed to creating safe and inclusive spaces where open conversations and knowledge sharing lead to greater understanding, support, and empowerment.

Our Board: Leading the Way

  • Karen Kelm

    PRESIDENT

  • Carrie Lakatos

    VICE PRESIDENT

  • Todd Befus

    TREASURER

  • Theresa Bolton

    SECRETARY

  • June Clark

    DIRECTOR

  • Melissa Gillett

    DIRECTOR