Inspired by Families:
How Real Stories Drive Change
he Thompson Family:
Finding Strength Through Connection
“When our son, James, was diagnosed with Fragile X syndrome at the age of two, we were overwhelmed by the unknown. We didn’t know where to turn for support or how to navigate his learning needs. That’s when we found Fragile X Canada. Through their insights and community connections, we not only gained the knowledge we needed to understand this condition, but we also found a network of families who shared our journey.
Today, James is thriving in school, thanks to early intervention and the support we've received.
Fragile X Canada has truly been a lifeline for us.”
— Emily Thompson, Parent
A Mother’s Journey:
Teaching Future Doctors the Power of Compassion
“When my son, Ethan, was diagnosed with Fragile X syndrome, I had no idea what that meant for our family. We faced countless doctors’ appointments, therapies, and questions about his future. What I found most challenging wasn’t just the diagnosis, it was finding doctors who truly understood what it meant to raise a child like Ethan, to see not only his struggles but also his strengths. That’s why I started sharing our story with medical students.
I’ve had the privilege of speaking to future doctors, helping them see beyond the medical charts and understand the human side of Fragile X. I want them to see Ethan not just as a patient with a genetic condition but as a boy who loves music, has a memory like a steel trap, and lights up the room with his smile. When I share our story, I can see the shift in the room. These future doctors realize that behind every diagnosis is a family with hopes, fears, and dreams.
My hope is that through our story, medical students will go on to treat families like mine with the empathy and understanding we need. Because yes, Fragile X comes with challenges, but it also brings so much love, joy, and resilience. And that’s what I want them to remember.”
— Anna, Mother and Advocate
Inspired by Families:
How Real Stories Drive Scientific Discovery
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A future where Fragile X is fully understood and supported; where every individual and family is equipped to thrive across all stages and aspects of life.
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Fragile X syndrome
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While Fragile X syndrome affects learning and development, individuals with Fragile X syndrome often have unique strengths in areas like social connection, creativity, and memory.
With the right support, individuals can thrive and lead fulfilling lives.
LEARN MORE ABOUT STRENGTHS AND ABILITIES
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FRAGILEX CANADA
Building Expertise. Inspiring Hope and Possibility
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Our purpose is 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.
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At FragileX Canada, we are dedicated to providing individuals, families, investigators, and clinicians with the knowledge, support, and community they need to navigate Fragile X. Whether you are newly diagnosed, seeking ways to connect, or looking to advance research and clinical care, you are not alone.
We are here to inspire hope, foster collaboration, and build a brighter future together.
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Our Story
Building a stronger community - Coming Soon
Empowering Families
Resources and Guides: Eoducational materials, guides, and toolkits to help families navigate the journey of living with Fragile X.
Community Stories: Success stories and testimonials from families who have found strength and resilience through the support of the community.
Workshops and Webinars: Information about upcoming workshops, webinars, and support groups focused on family empowerment.
Enhancing Care Excellence
Innovative Treatment Approaches: New and emerging treatments and therapies to improve the quality of life for those living with Fragile X.
Caregiver Support: Resources and strategies for caregivers to ensure they are supported in their role.
Expert Insights: Articles and interviews with parents, community members, and leading healthcare professionals specializing in Fragile X care.
Driving Scientific Discovery
Current Research Projects: Detailed information and ways to participate in ongoing research projects and studies related to Fragile X.
Research Milestones: Significant milestones and breakthroughs in Fragile X research.
How to Get Involved in Research: Explore opportunities for investigators and clinicians to collaborate, lead, and drive breakthroughs in Fragile X research and care.
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Inspired by Families:
How Real Stories Drive Change
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The Thompson Family:
Finding Strength Through Connection
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“When our son, James, was diagnosed with Fragile X syndrome at the age of two, we were overwhelmed by the unknown. We didn’t know where to turn for support or how to navigate his learning needs. That’s when we found Fragile X Canada. Through their insights and community connections, we not only gained the knowledge we needed to understand this condition, but we also found a network of families who shared our journey.
Today, James is thriving in school, thanks to early intervention and the support we've received.
Fragile X Canada has truly been a lifeline for us.”
— Emily Thompson, Parent
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A Mother’s Journey:
Teaching Future Doctors the Power of Compassion
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“When my son, Ethan, was diagnosed with Fragile X syndrome, I had no idea what that meant for our family. We faced countless doctors’ appointments, therapies, and questions about his future. What I found most challenging wasn’t just the diagnosis, it was finding doctors who truly understood what it meant to raise a child like Ethan, to see not only his struggles but also his strengths. That’s why I started sharing our story with medical students.
I’ve had the privilege of speaking to future doctors, helping them see beyond the medical charts and understand the human side of Fragile X. I want them to see Ethan not just as a patient with a genetic condition but as a boy who loves music, has a memory like a steel trap, and lights up the room with his smile. When I share our story, I can see the shift in the room. These future doctors realize that behind every diagnosis is a family with hopes, fears, and dreams.
My hope is that through our story, medical students will go on to treat families like mine with the empathy and understanding we need. Because yes, Fragile X comes with challenges, but it also brings so much love, joy, and resilience. And that’s what I want them to remember.”
— Anna, Mother and Advocate
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Inspired by Families:
How Real Stories Drive Scientific Discovery
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“As a researcher, I’ve spent years studying the FMR1 gene and its impact on Fragile X Syndrome, focusing on the science behind the condition. But the biggest turning point in my career wasn’t in the lab, it was in the community.
I’ll never forget the first time I sat down with a group of families at a Fragile X Canada event. Hearing their stories, about their daily challenges, their fears, but more importantly, their incredible strength and resilience, transformed the way I approached my research. One mother, in particular, shared how her son’s curiosity and love of learning, despite his challenges, inspired her to find new ways to help him thrive. Her words stayed with me. She said, ‘If you focus on his strengths, he’ll show you how much he can achieve.’
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That conversation changed my perspective. I realized that our research needed to be more than just about understanding the mechanisms of Fragile X, we needed to find ways to translate our discoveries into meaningful improvements for these families’ lives. Now, every project I work on, from developing potential treatments to understanding brain function, is inspired by the families I’ve met. Their stories remind me every day that behind every gene, there’s a person with hopes, talents, and potential.
The families I’ve met through Fragile X Canada have shaped my approach to research in profound ways. They’ve taught me that science isn’t just about data; it’s about making a real difference in the lives of those affected. Their resilience fuels my determination to find solutions, and I carry their stories with me in every step of my research journey.”
— Fragile X Researcher
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What are the big research ideas? … coming soon
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Explore the latest breakthroughs and innovative research in Fragile X syndrome and related fields. Discover how these cutting-edge studies aim to improve the quality of life for individuals and their communities. Stay informed about the advancements that hold the promise of transformative impact and meaningful change.
Innovative Therapies I Genetic Research Advances I Behavioural Interventions I Community Impact Studies
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Your support helps us 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.
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Mailing Address: 777 Tapscott Road, Scarborough, Ontario, M1X 1A2
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