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Community Stories


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Fragile X

Karen’s story is an inspiring example of how a mother’s love, curiosity and resilience can lead to positive outcomes for her family and her community. She hopes that by sharing her experiences and her research, she can help other families living with Fragile X and other rare diseases to find their own strengths and champions. She also hopes that by raising awareness and understanding about Fragile X, she can contribute to the advancement of research and care for this condition.

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“Being a mom of a child with disability is the most special thing in the world. I was meant to be his mom, we have a special bond. He’s my whole world and I feel so blessed. S is my best friend and I love him more than I can tell you.”


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Liam's Story

"Liam is the happiest kiddo and lights up our life. We are thankful we came across the conference and were really able to get involved"

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