Celebrating our Undiagnosed Rare Disease Awareness Ribbon, created by Ava Szajnuk and designed by Erica Braymen in 2016! RUN’s first #UndiagnosedDay was on April 29th, 2016! We created the Undiagnosed Awareness ribbon from Ava Szajnuk’s drawing. Ava was eight years old at the time and an undiagnosed rare disease patient. Her brother, Oskar, and her sister, Lucy, are also undiagnosed rare disease patients. Since zebras represent the rare community, we envisioned having a zebra ribbon like the Rare Disease Awareness ribbon but added baby blue and baby pink colors to it. Erica Braymen designed the ribbon at Ecosyse. Together, we brought it to life! It has been celebrated all over the world on #UndiagnosedDay! Learn more about the history of the ribbon and how it has been shared globally: https://rareundiagnosed.org/undiagnosed-rare-disease-awareness-ribbon-created-by-ava-szajnuk-designed-by-erica-braymen-in-2016/ #undiagnosed #undiagnosedawarenessribbon Much Love, Gina Zanik (fb)

We have Recursion's "Evening of Hope" - Utah Rare Disease Day 2025 video! A special thank you again to all of our incredible speakers for being there this year to celebrate Rare Disease Day on February 27th, 2025. The speeches were so inspirational and impactful. We had a wonderful evening with our rare disease stakeholders and our rare and undiagnosed community. We also want to give a very special thank you to Recursion Pharmaceuticals for hosting the event! Speakers included: -Chris Gibson, Recursion Co-founder and CEO -Tracy George, Unit and Chief Scientific Officer, ARUP Laboratories & Professor of Pathology, Spencer Fox Eccles School of Medicine, University of Utah -Aimee Edwards, Executive Director, BioHive Utah -Kelvyn Cullimore, President & CEO, BioUtah -Sylvia Lam, Rare Disease Advocate, Utah Rare Disease Advisory Council (RDAC) -Ava Szajnuk (Zanik), Undiagnosed Rare Disease Patient, Rare and Undiagnosed Network (RUN) -Josh Bonkowsky, MD PhD, Chief, Division of Pediatric Neurology & Director, Primary Children's Center for Personalized Medicine at University of Utah -Rachel Palmquist, University of Utah Health, Intermountain Genetic Counselor, Primary Children’s Gene Kids -Michael George, Undiagnosed Rare Disease Patient, Rare and Undiagnosed Network (RUN) -Stacey L. Clardy, MD PhD FAAN, MD PhD, Associate Professor of Neurology, University of Utah & Salt Lake City VAMC -Najat Khan, PhD, Recursion Chief R&D Officer and Chief Commercial Officer We thank everyone for their continued support, love and prayers for all of the families in our rare and undiagnosed community here in Utah and everywhere! Much Love, Gina, Justin, Ava, Oskar & Lucy (fb)