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Fuller, Prader-Willi Syndrome Association | USA

Sharing Our Rare: Leslie and Corey Fuller

Rare Disease Day, which falls on February 28th each year, helps shine a light on the roughly 7,000 recognized rare diseases. To assist in this effort, we have been asking our community to tell us how you "share your rare" for Prader-Willi syndrome. One unique and impactful way we have heard from families is how they've received a Rare Disease Day Proclamation from their local city officials.

Leslie and Corey Fuller are parents to James, living with PWS, and were inspired to reach out to their local government.  Below, they share the steps they took to get a Rare Disease Day Proclamation and more about why they advocate.

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What motivated you to reach out to your local government/officials?
The PWS family that motivated us. James is our hero! He’s the strongest, kindest, most loving soul. We want to share his story with our community an  hope that we reach a kiddo / family that might not have found their voice yet. We’ve taken one small step so that we and others may take many more.

Why do you encourage others to do the same and what is the best first step you recommend they do?
PEACE. Pay your experience forward; we’re all individuals! We are all so much more alike than different. It feels good and healthful to share PWS. The best first step, is to take a step. Call, email, or write your local government officials, representatives, and senators. It’s not nearly as intimidating as you think.

How did you receive the proclamation and what was that experience like?
We’ll be presented with the Proclamation on Monday, 2/27.

What inspires you to advocate for PWS?
James, Education, Families, Love. Those who came before us and those who come after. We’re so grateful to be a part of the PWS community. We’re inspired by James’ providers, grandmas, aunts and uncles, cousins, and friends. It takes a village!! We’re so incredibly grateful that our family is as amazing as our PWS Family.

 

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