community profile
Diana’s family
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Our story
Diana was diagnosed with PKAN when she was very young. Our family is still learning what this diagnosis means, and we are trying to balance the reality of the disease with the joy and possibility of her everyday life.
We joined this community because we wanted to find other families, share what we are learning, and stay close to the research. We are especially interested in gene therapy, fundraising, and connecting with families who are newly diagnosed.
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