When her children were diagnosed with the ultra-rare condition Pseudoxanthoma elasticum (PXE), Sharon Terry didn’t wait. She rolled up her sleeves, stepped into advocacy, and transformed her family’s crisis into a movement that has helped thousands.
From Family Fear to Founding a Movement
Sharon’s journey began when her twins and family faced PXE, a genetic disease affecting connective tissues and the cardiovascular system. Distrustful of waiting for “someone else” to act, Sharon and her husband founded PXE International—a research-driven patient organization focused on discovery, treatment, and community support.
Why Her Story Matters to Warrior Moms
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She turned hardship into leadership. Faced with her children’s uncertain future, Sharon became a voice for change—both in research and in patient-community building. -
She built community when none existed. PXE International became a safe space for families to connect, share questions, and feel understood—just as we aim to do with Warrior Moms.
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Her mission went global. Sharon’s work expanded to co-found the Genetic Alliance and helped shape national genetic policy and patient-registry efforts.
What This Means for You
If you’re a mom navigating a rare disease—whether your own or your child’s—you’re in good company. Sharon’s story shows that:
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You don’t have to wait for permission to advocate.
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You’re stronger than isolation.
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Your voice can shape change for your family and many others.
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Community matters: your journey can help others, and theirs can support you.
At Warrior Moms Living With Rare Disease, we invite you to join the community, share your story, and connect with moms who know what it’s like to carry both love and struggle. Because no one should walk this path alone—together, we are stronger.