RUN’s NBA Initiative: Utah Jazz National Anthem Buddies on March 2nd, 2019!
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. #GoJazz
cherish forever.
Photograph by Melissa Majchrzak/NBAE
A very special thank you to the Larry H. & Gail Miller family and to our Utah Jazz family for our fifth year as National Anthem Buddies. Thank you to Gina Calvert for all of your hard work planning the night. Thank you to Melissa Majchrzak/NBAE and Ashley Wright Photography for all of your inspiring photographs of #RUNNBA. Thank you to Becky Lindsey for your help during the event. #JazzFamily
A very special thank you to all of our RUN families. You inspire me every single day to continue on this journey with RUN. #RUNFamilyForever
Photograph by Ashley Wright Photography
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. #RUNNBA
Photograph by Ashley Wright Photography
Chase “Jasper” Peterson
Photograph by Ashley Wright Photography
Photograph by Ashley Wright Photography
Photography by Ashley Wright Photography
My dream when starting RUN was to create a rare and undiagnosed family for our children so they would have a support system for life. It warms my heart to see our rare and undiagnosed children growing up together. #RUNFamily
Our children are still standing together to
raise awareness five years later.
Thank you to Anne Bruns for your help with the National Anthem Buddies and for all of your help with RUN’s future events. Thank you to Season Atwater for your years of donated photography to RUN and our family.
Thank you to all of my rare sisters. You are always there for me and I am forever grateful for your friendship, your mentorship and your sisterhood. #RARESisterhood
February 28, 2015
Photograph by Valdez Photography
our Rare Angels and everyone
fighting for their lives suffering with
a rare or undiagnosed disease.
Photograph by Catrina Nelson
RUN’s journey.
Gina & Catrina Nelson
Stephen Mark Trummer,
Ava, Oskar & Lucy Szajnuk
Much love,
Gina & Justin
Learn More: RUN’s NBA Initiative #RUNNBA
This was our fifth year for our RUN’s NBA Initiative with the Utah Jazz.
2018
2017
2016
2015
Why this means so much to our family?
Ava, Oskar, Lucy and I are all living with an undiagnosed rare disease. Our family has traveled the country in search of a diagnosis, a treatment and a cure. Unfortunately, our diagnostic odyssey has taken a lot of joy from our lives. When my husband, Justin Zanik, accepted the job as Assistant General Manager with the Utah Jazz in the fall of 2013, our lives immediately changed for the better. When we attended their games, our pain and our sadness faded into the background. Although, I must admit that Oskar is not able to sit in the arena and watch the games due to his sensory issues. He is still the biggest Jazz fan! He has a wall in his room full of the posters Justin brings him after every home game! 
He knows every single player’s stats and loves to cheer them on from home. It is a very special moment for Oskar when he gets to stand on the court for the National Anthem. I know he is hurting but he stands there so proud to be a part of the Utah Jazz family. For us girls, we cheer! We laugh! We have a lot of fun! We wanted to bring the joy of the NBA to all of our rare and undiagnosed families.
I recently thought about why the NBA plays such a huge part in the lives of our rare and undiagnosed families.
It’s an honor to play in the NBA. You have to work hard and be more dedicated to anything in the world to be a success in the NBA. Just as a young boy or young girl picks up a basketball and learns how to dribble and shoot, we learn how to be an expert playing the game of rare and undiagnosed. Our skills are much different. However, we wake up every day and persevere just like a player does on the court. Our court is the four walls of a hospital room, emergency room, school, work or our home. When I look at the pictures over the past five years, I think of our RUN families as our All-Star team standing on the court with the inspiring NBA players.
Jazz to Recognize Children from Rare and Undiagnosed Network at March 2 Game
Youth to Stand with Jazz, Bucks During National Anthem
SALT LAKE CITY (February 28, 2019) – Thirty-two children with rare and undiagnosed diseases and their siblings will stand with members of the Utah Jazz and Milwaukee Bucks during the National Anthem prior to the Saturday, March 2 game at Vivint Smart Home Arena.
The participating youth are living with a chronic and debilitating undiagnosed or rare disease, or a surviving sibling, who will hold a portrait in memory of a loved one. This season marks the fifth year that the group will be recognized at a Jazz game.
The group’s attendance at Saturday’s game is supported by tickets provided through the Jazz player ticket donation program.
The grassroots organization Rare and Undiagnosed Network (RUN) raises awareness for the one in 10 Utahns who suffers from a rare disease, making up more than 30 million patients living in the world of the unknown. On March 1, RUN will launch the #UndiagnosedDay campaign on social media to shine a light on the cause, and the organization is spearheading National Undiagnosed Rare Disease Day on April 29. The campaigns target the public and seek to raise awareness among policymakers, public authorities, industry representatives and health professionals.
Jazz assistant general manager Justin Zanik, his wife, Gina, and their three undiagnosed children organized RUN to raise awareness for families with children afflicted with undiagnosed or rare conditions. The group works to provide genomic information and build community for families by bringing together researchers, insurance providers and industry stakeholders.
“These children persevere just like the players on the court, though their court is the four walls of a hospital room, emergency room, school, work or home,” said Gina Szajnuk, founder of RUN. “This moment at Saturday’s game will call public attention to the challenges faced by children fighting rare and undiagnosed genetic conditions, but it will also show them that they are not alone. We will stand together in hopes of better lives for all of them.”
For more information, visit rareundiagnosed.org.
Media Contacts: Frank Zang, (801) 325-2570, frank.zang@lhm.com or Matt de Nesnera, (703) 554-5499, matt.denesnera@utahjazz.com; Gina Szajnuk, Rare and Undiagnosed Network (RUN), (310) 883-4353, ginaszajnuk@gmail.com
—@JazzDoingGood or utahjazz.com—
About the Utah Jazz
Founded as the 18th member of the National Basketball Association (NBA) in 1974, and located in Salt Lake City since 1979, the Utah Jazz are committed to excellence as a team and in the community. On the court, the Jazz are the second-winningest team in the NBA over the last 30 years, having won nine division titles and two Western Conference championships along with 15 seasons of 50-plus wins, and are supported by one of the most passionate fan bases in all of sports. The Jazz are part of Larry H. Miller Sports & Entertainment that includes Megaplex Theatres, Vivint Smart Home Arena, The Zone Sports Network, NBA 2K Jazz Gaming, NBA G League Salt Lake City Stars, Tour of Utah professional cycling stage race and Triple-A Salt Lake Bees baseball.
NBA Initiative Goals:
Create awareness of rare & undiagnosed diseases
Build community
Connect families with doctors and really cool basketball players
Have fun
Enjoy the great game of basketball
Past NBA Initiative elements:
We have had up to thirty children and their families (total of 100 people) stand on the court as National Anthem buddies during the National Anthem.
We have had up to 150 tickets donated for rare families to attend the game
We have had a KJZZ video made about the rare community and Rare Disease Day®, which aired during the game as well as on their NBA website
We have had a page in the Game Night Program supporting
We have had a PSA during the game supporting
We have had a family honored during half-time
We have had a table in the arena
We have had a skybox donated for the families to watch the game, which helps with handicap access and builds togetherness
Learn more about RUN’s NBA Initiative
Watch our KJZZ video to learn more about how this all began in 2015!
Watch RUN’s Mission played on the Milwaukee Bucks Jumbotron!
Media for #RUNNBA
MediaPlanet: The NBA Pairs up with a Grassroots Nonprofit for Rare Diseases
NBA Article on Hosting our Utah Rare Children on the court
Sugar House City Journal: Children with rare diseases enjoy Utah Jazz game
Deseret News about rare kids on the court of the NBA Utah Jazz
Jazz News: 30 Rare Children Tonight Game 2015
Salt Lake Tribune article on Ava and our family moving to Salt Lake City and the Utah Jazz
Rare Disease Day was February 28th
Undiagnosed Rare Disease Day is April 29th
Rare Disease Facts and Figures:
There are over 7,000 distinct types of rare diseases
In the United States, a disease is defined as rare when it affects less than 200,000 at any given time
Rare diseases affect 1 in 10 people, more than 350 million people worldwide
Approximately 50% of the people affected by Rare Disease are children
30% of children with rare disease will not live to see their 5th birthday
There are more Americans who live with a rare disease than ALL of those who have either HIV, Heart Disease or Stroke.
95% of rare diseases are without an FDA approved treatment or therapy.
Those 5% with FDA treatment still struggle with accessing it due to high costs and variability.
Families & private foundations provide about 3% of ALL medical research funding in the U.S.
A special thank you again to everyone involved in the NBA that helps to bring RUN’s NBA Initiative to our families.
A very special thank you again to the Larry H. Miller family and our Utah Jazz family for bringing our dream to reality.
A very special thank you again to all of our RUN families for your continued support of our family. You inspire me every single day to stay on this journey with RUN. #RUNFamily
Much love, Gina
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
