Rare & Undiagnosed Network

February 21, 2019 12:00 pm No Comments 16

The Utah Jazz will honor 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 donated a total of 110 tickets through the NBA Player Ticket Donation Program. The Jazz family donated another 21 tickets! We have a total of 136 tickets to use for the Jazz game against the Milwaukee Bucks!

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 the 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.

In 2016, five more NBA teams joined the Utah Jazz and honored the rare and undiagnosed community – the Boston Celtics, Denver Nuggets, Milwaukee Bucks, Sacramento Kings and the Washington Wizards.

In 2017, the Boston Celtics, the Milwaukee Bucks, the Phoenix Suns, the Utah Jazz and the Washington Wizards all hosted rare and undiagnosed families.

In 2018, the Milwaukee Bucks and the Utah Jazz honored our RUN families. We had over 100 tickets for the game with the Utah Jazz last March!

The night I stood on the court with my three children was a moment in time I will cherish for the rest of my life.

RUN families were treated to the Utah Jazz vs Milwaukee Bucks game on January 7, 2019. The Jazz family donated 6 lower bowl seats! This past fall we also donated several of our lower bowl tickets to RUN families and to our RUN supporters.

As of today, the Boston Celtics are donating a family experience on March 23rd! Do you know a rare and undiagnosed family living in the Boston area?

This will be our fifth year as National Anthem Buddies on the court with the Utah Jazz!

2018

2017

2016

2015

The very first family we hosted for a Jazz game was the Might family

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.

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

If you would like to be on the court on March 2nd, please reach out! Please share with us what it would mean to you and your family to be on the court for the National Anthem with the Jazz! Contact information is below.

A special thank you to everyone involved in the NBA that helps to bring RUN’s NBA Initiative to our families.

A very special thank you to the Larry H. Miller family and our Utah Jazz family for bringing our dream to reality.

Much love, Gina

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 is 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.

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.