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RARE AND UNDIAGNOSED NETWORK: RUN, DON’T WALK: 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.
UNDIAGNOSED DAY is April 29th: April 29th is Undiagnosed Day. It is a day to celebrate those living with an undiagnosed rare disease and their families as well as to remember the ones we have lost. We also want to thank everyone dedicated to working rigorously within the undiagnosed rare disease community to find a patient’s diagnosis.
“An Evening of Hope” – Utah Rare Disease Day 2025 video – hosted by Recursion: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 for hosting the event!
A mother’s unrelenting crusade to help those trapped in the wilderness of the undiagnosed – by Lee Benson: Gina Szajnuk’s kids suffer from undiagnosed disease; so does she. She is determined to find answers, and help.
How Utah Jazz GM Justin Zanik found himself fighting for not just his team, but his life – ESPN: “We’re going to do this together,” Justin said. “We’re stronger together.”
ESPN Daily: How a Family’s Bond Saved the Jazz GM: The life of a successful NBA executive requires you to fix everything, everywhere all at once. So, when Utah Jazz general manager Justin Zanik found himself in a fight for his life, he was suddenly in the unfamiliar position of needing to be fixed himself.
USA TODAY: NBA GM is savoring life one year after kidney transplant from living donor by Jeff Zillgitt: Since the Zaniks’ three children tested positive for the gene that causes PKD, they may have to deal with that just as their dad and Justin’s father, who received a kidney transplant nearly 20 years ago, did. But there are ways through in vitro fertilization for the Zaniks’ children to prevent their children from having PKD, and they are in close contact with PKD-Free Alliance, which aims to eliminate the disease.
Justin Zanik a Kidney Transplant Patient: On April 2, 2024, Utah Jazz General Manager Justin Zanik received a life-saving kidney transplant. In this powerful and personal story, Justin opens up about his battle with polycystic kidney disease (PKD)—a condition that went undetected until a routine physical revealed his kidney function had dropped to just 14%. With the unwavering support of his wife, family, and medical team at University of Utah Health, Zanik faced the challenges of kidney failure and the complexities of organ donation, ultimately securing a second chance at life. His journey is a testament to resilience, the importance of early detection, and the life-changing impact of organ donors. Watch as he shares his emotional and inspiring experience, raising awareness about PKD, the need for organ donors, and the power of community in overcoming adversity.
RUN’s NBA Initiative: Utah Jazz on March 2nd, 2019: RUNs NBA Initiative is to raise awareness and to honor all rare & undiagnosed families through the generosity of the NBA. The Utah Jazz honored 32 rare and undiagnosed children on the court as National Anthem Buddies on March 2nd, 2019. Derrick Favors, Rudy Gobert, Joe Ingles and Ricky Rubio who generously donated a total of 110 tickets through the NBA Player Ticket Donation Program. Members of the Jazz staff also donated another 26 tickets. We had a total of 136 tickets to use for the Jazz game against the Milwaukee Bucks.
NBA Utah Jazz: KJZZ’s story on the Zanik family and #RUNNBA in 2015: Justin and Gina Zanik have organized R.U.N. – the Rare and Undiagnosed Network, to bring together researchers, doctors and insurance providers to help families with rare and undiagnosed diseases
Jazz to Host 30 Rare Children at Tonight’s Game in 2015: Justin Zanik, Jazz assistant general manager, and his wife, Gina, and their three rare children, have organized RUN to raise awareness for families with children afflicted with undiagnosed or rare conditions and to bring together researchers, insurance providers and industry stakeholders to meet these families’ needs.
MORE MEDIA:
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”
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
EVEN MORE MEDIA:
Rare & Undiagnosed Network Provides Advocacy, Networking and Support for Patients and Families
Utah Rare Disease Day Recap 2023
Global Genes Patient Advocacy Summit 2022: Undiagnosed? Misdiagnosed? Issues Related to Obtaining a Genetic Diagnosis
Compassion in Medicine: Why Caring Matters – Future of Personal Health
#RUN2U 2019: Unique Challenges of Living with a Rare or Undiagnosed Disease
FDNA.com: Moms on a Mission for Rare Disease Advocacy (Part 1)
MediaPlanet: The NBA Pairs up with a Grassroots Nonprofit for Rare Diseases
Fox 13: Utahns Raise Awareness for Rare,Undiagnosed Diseases
RUN’s #RUNNBA: Utah Jazz National Anthem Buddies
Livestream of Ava Szajnuk’s Speech at the Utah State Capitol!
Small Forces video: RARE AND UNDIAGNOSED NETWORK: RUN, DON’T WALK
Park Record Shares about the Szajnuk’s Journey and our 2018 Upcoming Events
Patient Worthy Shares RUN’s Upcoming 2018 Events
Julie Potter’s story in The Leader
Aliyah Peedle’s story in The Leader
Sugar House City Journal: Children with rare diseases enjoy Utah Jazz game
Rachel Nielsen’s story in The Leader
RUN on the NBA Milwaukee Bucks Jumbotron
Sense About Science USA: All Trials USA Blog about The Szajnuk’s Journey
EGL Genetics Blog: The Rare & Undiagnosed Family
The Mighty Rare Disease’s Live Stream of Gina Szajnuk
Rare Disease Report Interview of Gina Szajnuk
Global Genes 2016 Summit: Gina’s Speech on Utah Rare
Andrew Scholte’s link about Running for the Szajnuk’s family
Gina Szajnuk’s blog about RUN for The Mighty
RUNmyDNA’s first article in the American Journal of Medical Genetics – Part A
The Szajnuk’s story in the Park Record in Park City, UT
Gina Szajnuk, Cristina Might and Julie Potter on ABC’s Midday program for Utah Rare
The Szajnuk’s FOX 13 News Interview for Undiagnosed Day
The Szajnuk’s Journey on Global Genes
KSL Interview of Harle Valdez and her family
Deseret News Article on Rare Disease Day
NBA Article on Hosting our Utah Rare Children on the court
Daily Herald Article about Rare Disease Day
Deseret News about rare kids on the court of the NBA Utah Jazz
Gina Szajnuk’s letter to Senator Hatch published in the Salt Lake Tribune
Gina Szajnuk’s letter to Senator Hatch published in the Deseret News
Gina Szajnuk on Rare Cast about Rare Disease Day
Undiagnosed Day Without Doctors Video at the National Ability Center
#UndiagnosedDay Social Media Campaign and RUN Video
NORD’s Announcement about their Rare Action Network and Gina Szajnuk as their Utah State Ambassador
Tute Genomics and Josh Forsythe’s No Child Left Undiagnosed Manifesto
Grayson McClure’s Journey in the Review Journal
National Ability Center’s Newsletter: From the Desk of the Executive Director
Rare Angel, Charlee Nelson, remembered on FOX13 News
Mark Huffman’s Blog about Wearable Devices
KSL.COM video on the Szajnuk family
Global Genes Blog about the Szajnuk family
Szajnuk (Zanik) Family Whole Genome Sequencing Mission
Salt Lake Tribune article on Ava and our family moving to Salt Lake City and the Utah Jazz
Justin Zanik’s Bucks Announcement with the Milwaukee Bucks in the Wisconsin State Journal
Justin Zanik’s Bucks Announcement about joining the Milwaukee Bucks at Yahoo Sports
Jazz News: 30 Rare Children Tonight Game 2015
Utah Jazz Announcement about Justin Zanik joining as Assistant General Manager
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
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)