
Support The Jorie Effect: Hope for Rare Diseases
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The Jorie Effect: One Life. Infinite Ripples.
Jorie was born with a rare genetic disorder and no known treatment. But through a groundbreaking collaboration with Mayo Clinic, she became the first child to receive a personalized therapy that restored her WAC protein to healthy levels—an n=1 treatment designed just for her.
Now, we’re launching The Jorie Effect—a movement to bring that same hope to other children with rare diseases.
While our 501(c)(3) nonprofit status is pending, we’re raising early funds to accelerate the future of medicine by supporting BabyFORce and helping Mayo Clinic scale personalized therapy solutions to benefit more patients. Your contribution will:
• Advance ground-breaking personalized treatments, ensuring more children and families can access therapies tailored to their unique genetic and medical needs.
• Support a clinical trial for DESSH (DeSanto-Shinawi Syndrome)—a critical step in providing life-changing care for patients like Jorie, whose journey represents the hope and potential of precision medicine.
• Raise further awareness of treatments available for rare disease patients and their families.
Together, we can turn scientific breakthroughs into real-world healing for countless others waiting for their turn at a better future.
Because one life can change everything.
✨ Donate. Share. Be the ripple.
#TheJorieEffect
Organizer
Joanie Kraus
Organizer
Eden Prairie, MN