This is the power of your story

Awareness Day is almost here. Will you join us?

Jaclyn Rodriguez didn’t know what was wrong with her baby, Dallas, but she knew he wasn’t developing typically for his age. 

FOP was not on her radar until her mom had lunch with a coworker who had recently seen a documentary featuring Ashley Kurpiel, an adult living with FOP. The symptoms discussed in the documentary matched Dallas’ symptoms. 

That lunch led to an official FOP diagnosis for Dallas at 18 months old. 

"My mom and her friends have been absolutely instrumental," Jaclyn said, not only in helping her son receive an early and accurate diagnosis but in finding state resources to get the caregiving support they need.  

"If you’re comfortable with it, all I can say is share your story," she said. "If it wasn’t for the people around me and my mother sharing Dallas’ story, we would not be where we are."

Before Ashley Kurpiel was diagnosed with FOP, doctors thought she had cancerous tumors, leading them to amputate her arm. Despite not knowing the Rodriguez family, Ashley’s decision to share her misdiagnosis story allowed Dallas to avoid a lengthy diagnosis journey filled with unnecessary or dangerous procedures.  

Your story is one of the most powerful tools you have in helping individuals like Dallas receive the support he needs. 

This Awareness Day, on April 23, will you join us in sharing your story to end dangerous misdiagnosis? When you share your post or video about your own journey with FOP on social media, please include #FOPAwareness and tag @IFOPA so we can repost your content and support you. 

We need your voice in this conversation! You never know who might hear your story. 

Look out for more information on how you can get involved this Awareness Day! Follow us on Facebook, Instagram, Twitter and LinkedIn.

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