RUN’s NBA Initiative: Boston Celtics!
Thank you to the Boston Celtics for hosting the Paradis family for a pre-game experience on Sunday, March 24th. The Boston Celtics donated four tickets to Keegan and his family. Thank you to Dave Hoffman, Vice President of Community Engagement, and Ari Williams, Manager of Community Engagement, for your continued support of our family and RUN’s mission.
RUN’s NBA Initiative is to raise awareness and to honor rare and undiagnosed families through the generosity of the NBA.
Photograph by Boston Celtic’s Official Team Photographer
“We are sincerely thankful for the opportunity to have attended the Boston Celtics game on March 24th. It was such a memorable experience to be on that infamous parquet floor!” – Andria Paradis
RUN reached out to the UDN Clinical Site at Harvard Medical School to honor a local family in Boston. A special thank you to Tom Licata, & Paul Mazur, both with the UDN, for connecting RUN with the Paradis family.
Undiagnosed Disease Network (UDN)
Apply to the UDN
About the Paradis family: “For the past 15 years or so, we have been on an odyssey trying to determine what my husband Brendon’s diagnosis is. What started out as occasional difficulties driving at night turned into complete blindness about 8 years ago. Over the years, Brendon has endured endless doctors visits, awful medications, surgeries, trips to the NIH, all to be told no one knew what was the cause of his condition. For the most part, he had given up looking for answers, but took on the new challenge he had been dealt. When our son started to have some of the same symptoms Brendon presented with so many years ago, we knew that we had to find the answers, if not for Brendon, but for Keegan. Like his dad, there have been many doctors visits, lots of tests, but no answers. It is beyond frustrating to all involved! Genetic testing has not shed any light at this point either. While frustrating, we know that we are lucky that both Keegan and Brendon are a part of the UDN, and we are so hopeful that the answer is just a matter of time.
On a side note, the ironic part of all of this is that for the last 13 years, I have worked at a pharmaceutical company dedicated to serving the rare disease community. Who knew then that this would come full circle and be such a big part of my personal life, too?
It has not been easy for my husband, being blind, having a career, and raising two boys. We depend on family and friends SO MUCH to get everyone where the need to be, especially when I have to travel for work. And, sometimes, it has been challenging for the kids, too. There are things that their friends’ dads do that their dad can’t because of his disability. That said, there are so many things that the boys enjoy doing together, but one of them happens to be basketball. Basketball has been something that we have enjoyed together as a family- both Brendon and I used to play in high school and I went to Villanova for my undergraduate degree (go Wildcats!), so the kids really had no choice but to live the game! Both Keegan and my other son Tiernan enjoy watching and playing as well. This past season my husband and the kids set up a fantasy basketball league and have been consumed by it. It has been fun to see them be so into it and enjoying the sport together.
Which brings us to the RUN experience at the Celtics. While Brendon couldn’t see the players that were practicing feet away from us or the parquet at the Garden that he saw from afar either on TV or at a game in his earlier years, he knew just how special and exciting this experience was, and to be able to share with his boys, was priceless. He won’t see the actual picture of us standing at center court, but he can picture it. And, he, along with the boys and I, will always remember it.
While we do not know when we will have answers for Brendon and Keegan, we are very hopeful it will be figured out.
We are incredibly humbled that the UDN selected Keegan to attend the RUN initiative at the Boston Celtics, and so thankful for RUN for putting together such a special experience in partnership with the NBA.
With love,
The Paradis Family
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
