“An Evening of Hope” – Utah Rare Disease Day 2025 video – hosted by Recursion
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 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
Contact information: Gina Zanik (Szajnuk)
Co-founder and Executive Director, Rare and Undiagnosed Network (RUN)
Vice Chair, Utah Rare Disease Advisory Council (RDAC)
W www.rareundiagnosed.org
E ginaszajnuk@gmail.com P (310) 883-4353
To Read: A mother’s unrelenting crusade to help those trapped in the wilderness of the undiagnosed – by Lee Benson
To Read: “What is the hardest part of being undiagnosed?” by Gina Szajnuk
To Read: “Undiagnosed is a Diagnosis” by Ava and Gina Szajnuk
To Read: The Szajnuk Journey
To Read: “Push Through” by Ava Szajnuk
To Listen: RARE Cast by Global Genes: “A Young Rare Disease Advocate Discusses Life with an Undiagnosed Condition”
More Media:
To Read: How Utah Jazz GM Justin Zanik found himself fighting for not just his team, but his life – ESPN
To Listen: ESPN Daily: How a Family’s Bond Saved the Jazz GM
To Watch: Fox 13 News “Undiagnosed”
To Watch: RUN’s Two Year Anniversary Video by Small Forces
To Watch: RUN’s One Year Anniversary Video
To Watch: #UndiagnosedDay RUN’s 2016 Video
About
Gina Zanik (Szajnuk) started her career in the entertainment industry. She worked in Hollywood for over ten years. She supported movie directors, producers, actors, literary agents and executives. She entered the world of the NBA and NFL and served as Director of Client Services and Executive Assistant to the CEO at Priority Sports & Entertainment in Chicago. She supported the President of Basketball Operations at U1st Sports, an NBA and European basketball agency. She worked in corporations supporting VP, President, and CEO level executives for five years in Los Angeles and Manhattan. She now serves as the Founder and Executive Director for the Rare and Undiagnosed Network (RUN), a 501©3 nonprofit organization in Salt Lake City formed in 2014. Her three children, each of whom live with a chronic, invisible, and undiagnosed rare disease, continue to inspire, and motivate her to empower patients and their families with genomic information and community through advocacy, networking, and support. Gina is also living with a chronic, invisible and undiagnosed rare disease. She serves as the Vice-Chair of the Utah Rare Disease Advisory Council (RDAC). She is a member of the Undiagnosed Disease Network International (UDNI). In 2016, Gina was the Chair of Utah Rare and was on the Executive Committee for four years. Gina continuously works to build a network of rare advocates, geneticists, researchers, specialists, and volunteers who can come together under one platform. In 2016, RUN started the international Undiagnosed Rare Disease Day (Undiagnosed Day) awareness campaign on April 29th. She was a member of the Participant Engagement and Empowerment Resource (PEER) of the Undiagnosed Diseases Network (UDN) for two years. She served as the National Organization for Rare Disorders (NORD) as their Utah State Ambassador and then as their Undiagnosed Advocacy Ambassador for four years. She is a public speaker and published writer. In 2016, Gina won the Rare Voice Award from the EveryLife Foundation for Rare Diseases as well as accepted the Rare Champion of Hope – Advocacy Award from Global Genes. She is married to Justin Zanik, the NBA Utah Jazz General Manager. Gina has brought awareness to the public about the importance of undiagnosed and rare diseases through RUN’s NBA Initiative started in 2015. She was born and raised in Madison, WI. She graduated with a Bachelor of Arts from the University of Wisconsin – Madison.
(Photo by Season Atwater Photography)