Photo of a mom at a podium sharing her story of raising a child with Prader-Willi Syndrome

Spotlight on Advocacy: Own Your Story

Contributed by Denise Servais

I recently had the opportunity to attend a luncheon hosted by Chad Greenway’s Lead The Way Foundation. Chad Greenway, a former Vikings football player, along with his wife Jenni and many Twin Cities leaders associated with the foundation, were among the 120 attendees. The foundation’s purpose is to support families with medically complex children. At this event, I was invited to share my story, alongside other moms, about my journey raising a special needs child. As someone not used to sharing my story publicly, I felt nervous speaking to a large audience. I’ve heard Dorothea Lantz, PWSA’s Community Engagement Specialist, talk about the importance of sharing our stories. I recognized the importance of stepping out of my comfort zone to raise awareness about PWS. Although sharing my experiences often brings up strong emotions, which can make it difficult to share my story without becoming emotional, I am grateful for the opportunity. There is value in sharing one’s story, as author Brene Brown puts it: “When we deny our stories, they define us. When we own our stories, we get to write a brave new ending.” It is through these types of experiences I’ve learned that being vulnerable can connect us with others and make a positive impact in our lives and communities.

Do you have a story to share?

Tell us about a time you advocated for your child. Or share a heartwarming or inspiring story about your loved one with Prader-Willi syndrome. We love to spotlight stories of advocacy and hope, big and small.

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