International PPP3CA Awareness Day

April 1, 2026:

To our supporters and readers,

Thank you for taking the time to learn, support, and stand with us. Please take a moment to explore the newly updated PPP3CA Hope Foundation website.

You can now easily access our latest research efforts, partnerships, published papers, events, merchandise, and the incredible people behind our foundation. 

We’re proud of how far we’ve come—and excited for what’s ahead.

Today also marks something incredibly meaningful—our first-ever International PPP3CA Awareness Day.

We invite you to stand with our community by wearing zebra print/stripes, the symbol of rare disease, or one of our PPP3CA shirts. Every post, every conversation, and every show of support helps bring visibility to a condition that so many have never heard of—but that deeply impacts the families living it every day.

If you feel moved to give, your support directly fuels critical research and brings us closer to targeted treatments. Thank you for being part of this mission.

Why April 1st?

International PPP3CA Awareness Day was chosen with intention—to honor one of our bravest warriors, Penny.

Five years ago today, Penny was diagnosed with PPP3CA following the onset of infantile spasms at just four months old. Since then, she has endured an unimaginable journey—trialing over 20 medications and treatments, including the ketogenic diet, VNS, and corpus callosotomy surgery, without relief from seizures. Her epilepsy has profoundly impacted her development, and she requires full-time care.

In the face of this, Penny’s mother, Blaire, refused to face this diagnosis alone.

At a time when PPP3CA had only recently been identified (in 2017), and very few families were known, Blaire began reaching out—finding and connecting others across the world who were navigating the same rare journey. With the support of a small group of dedicated parents, she helped build what would become the PPP3CA Hope Foundation, officially established as a 501(c)(3) nonprofit in the United States in 2023.

Because of that determination, our community has grown into a global network of families, advocates, and researchers. Together, we have funded multiple research models, expanded awareness, and are actively working toward meaningful targeted treatment options.

Today, we honor Blaire’s leadership, Penny’s strength, and every family walking this path.

And today, we invite the world to stand with us—because rare deserves to be seen, supported, and understood.

Gratefully,

The PPP3CA Hope Foundation