#RUNNBA & #UndiagnosedDay
Between the NBA Playoffs with the Utah Jazz and raising awareness for our Undiagnosed Rare Disease Day this coming Sunday, it has already been a very emotional week! The support from our community for the Utah Jazz has been so incredible and so much fun!
It is an honor and a privilege to be able to call the Jazz our family. We are so very thankful to the Larry H. Miller family and to the entire Jazz organization for their continued support of our family. I was blessed to speak to Ms. Gail Miller for a few minutes at the first home playoff game. (It is actually making me cry typing this right now.) She was so generous to let all of the families on the court in March as National Anthem Buddies. I thanked her again and she gave me a big hug. I told her that I did not expect to have all of the families on the court with the kids! I felt like a kid myself that night! It was a moment I will cherish forever. Our #RUNNBA Initiative has been one of my favorite parts of our advocacy work as a family. The gift of a NBA game to our rare and undiagnosed families continues to bring as much joy to them as it does to our family! My husband’s support of the initiative has been so huge for all of our RUN families. I love you, Justin Zanik. So proud of you and all of your hard work.
Now on to our upcoming #NBAPlayoffs week…#GoJazz #TakeNote!
We had such an incredible weekend between both worlds!
#RUNNBA
April 23rd NBA Playoff tickets! When you have two playoff tickets in your hand…
The reality of living with a rare or undiagnosed rare disease is when you cannot go to the fun events because you do not feel well. How many events have you missed due to your illness?
#UndiagnosedDay…on to advocacy!
Learn about #UndiagnosedDay!
My heart is so full from the support around the world for #UndiagnosedDay!
Thank you to everyone here in the United States and around the world for helping to raise awareness for our undiagnosed rare disease community this month!
All rare diseases were once undiagnosed.
GOALS for #UndiagnosedDay on Sunday, April 29th!
1) Raise Awareness
2) Collaboration and Global Cooperation
3) Undiagnosed Rare Disease to be Recognized as a Distinct Population
April 21st
We had so much fun at the Salt Lake City Half Marathon with Dr. Lorenzo Botto, Representative Steve Eliason and their families. 
Learn more about the April 21st event!
“I’ve gone through a tiny challenge compared to what these families face every day,” said Botto. “If I have to get down on my hands and knees I will do that as long as it helps the cause.”
Must read! Learn about the Penelope Program in the article by Julie Kiefer through the University of Utah Health! Thank you so much Julie for sharing about Saturday morning with Dr. Lorenzo Davide Botto M.D. and Representative Steve Eliason at the #SaltLakeCityMarathon. RUN is honored and excited to be raising awareness for the #PenelopeProgram University of Utah Health Primary Children’s Hospital ARUP Laboratories Utah Science Technology and Research (USTAR) #UndiagnosedRare #RareDisease #UndiagnosedDay Utah Rare
April 27th
Between #NBAPlayoff games this week, we also had an incredible event on Friday, April 27th! We will head to game 6 of the Utah Jazz and Oklahoma City Thunder that evening at 8:30p! FOX13 News was there and the event should be on the 9p MST news tonight!
Learn more about April 27th’s University of Utah School of Medicine’s Pediatric Medicine Interest Group event!
We hope our speakers will inspire the medical students to explore the world of genetics. We want to introduce them to what it is like to live in a diagnostic odyssey and the constant unknown. We are also raising awareness for #UndiagnosedDay on April 29th! Thank you Erica Naomi Braymen for donating your time to create the flyer! Thank you all for your continued support! Aware of Angels Season Atwater Jenny Walker-Frisk Julie A. Potter Shauna Bingham Dr. John Carey, Andrew Carey.
The event is free and open to the public. Please register at http://www.signupgenius.com/go/508084aa8af2ba2fc1-rare
April 27th
Again, learn all about Undiagnosed Rare Disease Day at #UndiagnosedDay
May 12th
Tunes For Tosh 2.0 – 5k & 1 Mile Fun Run
Please join us for a 5K or 1 Mile fun run on May 12th at Sugarhouse Park to support the Penelope program. Tosh is a child whose rare condition was diagnosed through the Peneope program. Check in begins at 8:00 a.m., Race will begin at 9:00 a.m. This is a kid friendly fun run. Bikes, scooters, and skateboards are welcome! Register here
Learn more about Tunes For Tosh 2.0
Mom Moment: I just have to add that Ava is truly becoming her own advocate! Between speaking at the State Capitol on Rare Disease Day to speaking this Friday, we are so very proud of her! Happy tears:)
Thank you all for supporting our #Undiagnosed social media campaign this month as well as to cheer us on with the Utah Jazz! My heart is so full but my head is spinning like crazy! Very emotional week!
Thank you MediaPlanet for sharing “Undiagnosed” Persists as an Ominous Diagnosis for Rare Disease Patients
Thank you to Daniel Levine and Global Genes RARE Cast for raising awareness for #UndiagnosedDay!
Thank you The Mighty and NORD for teaming up to share about The Hardest Parts of Being Undiagnosed
A special thank you to Ecosyse for your website support and for your marketing materials!
We would also like to thank Small Forces for your donated video!
Thank you all for your continued support, love and prayers.
Much love,
Gina
Read More on the Szajnuk’s Journey