RUN’s NBA Initiative: Utah Jazz on March 29th!
On March 29th, RUN hosted the Teuscher family for dinner and a pre-game experience. It was a night of smiles, hugs and the Utah Jazz!
Ava, Oskar & Lucy Szajnuk
March 29th, 2019
Learn about August and Tyler’s work on HB435:
HB435: Undiagnosed Children Insurance Coverage Bill Passed!
Learn more about the Teusher family by watching the film:
One In A Million
Dr. Lorenzo Botto
A special thank you to Dr. Lorenzo Botto, the entire team in The Penelope Project and the University of Utah Health for your continued support of our family, the Teuscher family and all of the families suffering in a diagnostic odyssey and living in the world of the unknown. We truly appreciate your hard work and dedication to our undiagnosed rare disease community.
About One in a Million
University of Utah Health is proud to present One in a Million, an original short documentary. To learn more and to support rare and undiagnosed disease research, visit oneinamillion.uofuhealth.org. The film tells the story of Tyler, who lost his ability to walk, see, and hear by the time he was 10. The cause remained a mystery until U of U Health scientists searched his DNA for clues. What they found led to a discovery that changed the life of one remarkable boy. One in a Million was directed by acclaimed independent filmmakers Ross Kauffman and Jeremiah Zagar and co-produced by executive directors Geralyn Dreyfous and the Kahlert Foundation. The movie premiered at a U of U Health-sponsored panel during the 2019 Sundance Film Festival.
RUN’s NBA Initiative is to raise awareness and to honor rare and undiagnosed families through the generosity of the NBA.
March 29th, 2019
What is RUN’s NBA Initiative? When my husband, Justin Zanik, joined the NBA Utah Jazz in 2013, I had a dream to have rare and undiagnosed children honored during a NBA game. During the 2014-2015 NBA season, we approached the Utah Jazz family to see if this was even a possibility. Due to the generosity of The Larry H. and Gail Miller Family Foundation and the Utah Jazz, we were able to start the NBA Initiative for RUN. In 2015, the Utah Jazz were the first team to honor rare and undiagnosed diseases on their home court for their National Anthem. We also honored children that had passed away from a rare or undiagnosed disease by holding up their photograph. It was a dream come true for our family.
Learn more about RUN’s NBA Initiative on March 2nd with the Utah Jazz!
ABOUT RUN
RUN stands for the Rare & Undiagnosed Network. We’re a group of advocates, patients, families, researchers, and healthcare providers who share the same mission and vision: To empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.
Contact information:
Gina Szajnuk (Zanik)
Co-founder and Executive Director
E: ginaszajnuk@gmail.com
C: (310) 883-4353
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
