RUN’s NBA Initiative: NBA Teams Hosted Rare and Undiagnosed Families!

December 30, 2018 10:40 am 2 Comments 7

The  Utah Jazz  honored 30 rare and undiagnosed children and their siblings on the court as National Anthem Buddies on March 17th, 2018! Ricky Rubio and Alec Burks donated 100 tickets through the NBA Player Ticket Donation Program. The Milwaukee Bucks hosted our RUN families in a suite on March 2nd, 2018! Watch our KJZZ video from 2015 to learn more about our #RUNNBA!

More to come in 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 was 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.
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During the summer of 2016, we moved from the Utah Jazz family and joined the Milwaukee Bucks family. In 2017, we were blessed to take the NBA Initiative to the next level! Through the generosity of the Milwaukee Bucks and their player ticket program, Greg Monroe donated six games to RUN. We worked closely with the Children’s Hospital of Wisconsin Foundation to help locate families to benefit from a Buck’s family experience. The Milwaukee Bucks, the Utah Jazz, the Phoenix Suns, the Washington Wizards and the Boston Celtics all hosted rare and undiagnosed families in 2017.
The night I stood on the court with my children was a moment in time I will cherish for the rest of my life. It was such an honor and inspired me to continue on with #RUNNBA in 2019!
March 17th, 2018

2019 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 stand on the court as National Anthem buddies during the National Anthem.
  • We have had up to 158 tickets donated for rare families to attend the game
  • We have had a KJZZ video made about the rare community, which aired during the game as well as on their NBA website
  • We have had a page in the Game Night Program
  • We have had a PSA during the game
  • We have had a family honored during half-time
  • We have had a table in the arena
  • We have had a skybox and food donated for the families to watch the game, which helps with handicap access and builds togetherness
  • We have had the opportunity for the children to be on the court for the starting lineup
  • We have had families given lower bowl tickets and a pre-game experience

PAST EVENTS:

Watch RUN on the Buck’s Jumbotron in 2017!

Saturday, March 17th, 2018:

Utah Jazz vs. Sacramento Kings

7:00 PM – Vivint Smart Phone Arena

Address: 301 S Temple, Salt Lake City, UT 84101

The Jazz will honor 30 rare and undiagnosed children as well as their entire family on the court as National Anthem Buddies! We will also have rare angels honored by their family members by holding their photographs. Alec Burks and Ricky Rubio have donated 100 tickets through the NBA Player Ticket Donation Program!

More about #RUNNBA: Utah Jazz National Anthem Buddies

Meet the National Anthem Buddies! 

Friday, March 2nd, 2018:

Milwaukee Bucks vs. Indiana Pacers

7:00 PM – Bradley Center

Address: Bradley Center, 1001 N 4th St, Milwaukee, WI 53203

RUN families will enjoy a Buck’s suite! 18 tickets and $250 donated for food/drinks!

Wednesday, January 25th, 2017:

Milwaukee Bucks vs. Philadelphia 76ers

7:00 PM – Bradley Center

Address: Bradley Center, 1001 N 4th St, Milwaukee, WI 53203

The Bucks will provide RUN with 25 tickets, parking passes and food vouchers on behalf of Greg Monroe! RUN has donated the tickets to the Children’s Hospital of Wisconsin Foundation to help locate Milwaukee area rare and undiagnosed families.

February 1st, 2017:

Utah Jazz vs. Milwaukee Bucks

7:00 PM – Vivint Smart Phone Arena

Address: 301 S Temple, Salt Lake City, UT 84101
The Jazz player donation program will provide 8 tickets to RUN! The Jazz are playing the Milwaukee Bucks!  Justin and Gina donated 4 tickets from the Bucks earlier this year to the Angel’s Hands Foundation to attend this game as well!

Wednesday, February 8th, 2017:

Milwaukee Bucks vs. Miami Heat

7:00 PM – Bradley Center

Address: Bradley Center, 1001 N 4th St, Milwaukee, WI 53203

The Bucks will provide RUN with 25 tickets, parking passes and food vouchers on behalf of Greg Monroe! RUN has donated the tickets to the Children’s Hospital of Wisconsin Foundation to help locate Milwaukee area rare and undiagnosed families.

Friday, February 24th, 2017:

Milwaukee Bucks vs. Utah Jazz

7:00 PM – Bradley Center

Address: Bradley Center, 1001 N 4th St, Milwaukee, WI 53203

The Bucks will provide RUN with 25 tickets, parking passes and food vouchers on behalf of Greg Monroe! RUN has donated the tickets to the Children’s Hospital of Wisconsin Foundation to help locate Milwaukee area rare and undiagnosed families.

Sunday, February 26, 2017:

Milwaukee Bucks vs. Phoenix Suns

2:30 PM – Bradley Center

Address: Bradley Center, 1001 N 4th St, Milwaukee, WI 53203

RUN families will enjoy a Buck’s suite as well as being allowed to stand with the Buck’s during starting lineup. RUN will premiere a sixty second video during one of the Buck’s timeouts! We are so excited to build the relationship with the Milwaukee Bucks and with our community here in Milwaukee.

Wednesday, March 1st, 2017:

Milwaukee Bucks vs. Denver Nuggets

7:00 PM – Bradley Center

Address: Bradley Center, 1001 N 4th St, Milwaukee, WI 53203

The Bucks will provide RUN with 25 tickets, parking passes and food vouchers on behalf of Greg Monroe! RUN has donated the tickets to the Children’s Hospital of Wisconsin Foundation to help locate Milwaukee area rare and undiagnosed families.

Thursday, March 2nd, 2017:

Phoenix Suns vs. Charlotte Hornets

7:00 PM – Chesapeake Energy Arena

Address: 100 W Reno Ave, Oklahoma City, OK 73102

The Suns will provide RUN with a family experience. Calen Forsythe and his parents, Josh and Robyn, as well as Lissette Lent’s family will be honored on the court before the game.

Friday, March 3rd, 2017:

Utah Jazz vs. Brooklyn Nets


7:00 PM – Vivint Smart Phone Arena

Address: 301 S Temple, Salt Lake City, UT 84101

Thank you Boris Diaw for donating 60 tickets through the player donation program to RUN!

Thirty rare and undiagnosed children made an appearance on the court with the NBA Utah Jazz during their National Anthem on Friday, March 3rd at 7:00p. This is a very blessed opportunity to raise awareness for the rare and undiagnosed community. Sixty tickets were donated by Boris Diaw through their player donation program. We had tickets for one child accompanied by one adult. You will be escorted together and brought onto the court right before the National Anthem. It is an incredible experience to watch your child during the singing of the National Anthem alongside the NBA players and coaches.

We will be honoring Utah Rare, a coalition of rare disease stakeholders in Utah coming together to raise awareness for Rare Disease Day®, which is organized by the National Organization for Rare Disorders (NORD).

Friday, March 24th, 2017:

Milwaukee Bucks vs. Atlanta Hawks

7:00 PM – Bradley Center

Address: Bradley Center, 1001 N 4th St, Milwaukee, WI 53203

The Bucks will provide RUN with 25 tickets, parking passes and food vouchers on behalf of Greg Monroe! RUN has donated the tickets to the Children’s Hospital of Wisconsin Foundation to help locate Milwaukee area rare and undiagnosed families.

Friday, March 24th, 2017:

Washington Wizards vs. Brooklyn Nets

7:00 PM – Bradley Center

Address: 601 F St NW, Washington, DC 20004

The Wizards will provide RUN tickets to the game for two rare families to attend. Glenn “Bug” Maughan, KBG Syndrome, and his family will be attending the game as well as Natalie Dombo and her family.  The National Organization for Rare Disorders (NORD) is a local nonprofit in DC so they contacted one of their families. Natalia is five years old and has pulmonary hypertension. Her father, Mike, is involved with the PHA local DC Pediatric Support Group.

Sunday, March 26th, 2017:

Boston Celtics vs Miami Heat

Liam and his family will have a Boston Celtic family experience. Liam has CDG, a rare metabolic disorder,  he’s the sole owner of his subtype. DDOST-CDG.

Friday, March 31st, 2017:

Milwaukee Bucks vs. Detroit Pistons

7:00p PM – Bradley Center

Address: Bradley Center, 1001 N 4th St, Milwaukee, WI 53203

Greg Monroe donated 20 tickets to our RUN families and the children will be allowed to stand with the Bucks during starting lineup. We are so excited to build the relationship with the Milwaukee Bucks and with our community here in Milwaukee.

Monday, April 10, 2017:

Milwaukee Bucks vs. Charlotte Hornets

7:00 PM – Bradley Center

Address: Bradley Center, 1001 N 4th St, Milwaukee, WI 53203

The Bucks will provide RUN with 25 tickets, parking passes and food vouchers on behalf of Greg Monroe! RUN has donated the tickets to the Children’s Hospital of Wisconsin Foundation to help locate Milwaukee area rare and undiagnosed families.

RUN’s NBA Initiative in the MEDIA

 LINKS 

The Utah Jazz’s KJZZ story on  RUN

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

Jazz News: 30 Rare Children Tonight Game 2015

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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.

More Photos!

Pictures from 2015

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Picture from 2016

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Pictures from 2017