Andrew Scholte: “For the past two years I have been partnered with Emma, a member of the Gaucher community for the Running For Rare Team. This year I am very excited to be partnered with the Szajnuk family, who represent the undiagnosed community. This is the 8th year that I have been running on the Running for Rare team. This is a special year for me as I will be running in the Boston Marathon (supporting PK and his patient partner Bug in addition to the Szajnuk family). In May, I will be running in the Providence half-marathon and in July at IRONMAN Canada for Gina and her beautiful family of undiagnosed children. I wanted to introduce the Szajnuk family and Gina has written a great introduction to her family and how they live in an undiagnosed world of being medical refugees.”
Gina Szajnuk: Andrew Scholte is RUNNING FOR RARE for Ava, Oskar and Lucy! We are so excited to have Andrew in our lives. He is running the The Boston Marathon on Monday, April 16th! We have gotten to know him through FaceTime, phone calls and texting. We are going to be able to FaceTime with him during The Boston Marathon! Ava, Oskar and Lucy think Andrew is so AWESOME! For me, the mom/Gina, it means more than words can express…
Not only is he running for my three Rare and Undiagnosed children, he is running for me. As a Rare and Undiagnosed mom, I was a huge runner before I had my hip surgery. I have not gone for a run in almost five years now. I am due for my second hip surgery. Unfortunately, it is impossible to schedule my second surgery at this time with our calendar and commitments.
He is definitely running for Ava. When Ava runs, she is in pain immediately. Her teeth and chin hurt. I remember watching her on the last day of Kindergarten in a race around the track. She started out in first place. By the end of the race, her face was bright red and she could barely walk. She finished the race holding her left side. She couldn’t speak. She was in so much pain. She didn’t give up. She crossed the finish line.
Oskar can run. He came in fourth last summer in a race around the track. He was the shortest kid but he was fast!
Lucy. Not so much. She didn’t even want to try to run around the track with Oskar and Ava. It was too hot and she was heating up inside. They were nice enough to still give Lucy a medal.
All three children are currently diagnosed as Undiagnosed.
When I think of Andrew running for us, I start to get my happy tears! Not only is he raising awareness for #RareDiseases, he is raising awareness for our family, #UndiagnosedDay. We live in the world of the unknown and in pain every single day. We have been on our diagnostic odyssey for over four years now. We spend our days raising awareness for Utah Rare families, RUN families and the entire rare and undiagnosed community. To have Andrew raising awareness for #TheSzajnuks…makes me feel so very blessed.
Thank you, Andrew, for bring a little light to our dark journey. We are here to lift you up during your runs and to give you the strength to go the extra mile.
You are Running For Rare
You are Running For Ava, Oskar and Lucy
You are Running For me
You are Running For all of our RUN families
You are Running For all of our Utah Rare families
You are Running For all of our Undiagnosed families
As one of our RUN dad’s, Gabe Valdez, says:
RUN HARD
RUN FAST
JUST RUN
#RareUndiagnosed #RareDisease #BostonMarathon #Running4Rare #UndiagnosedDay #TheSzajnuks
About
The Running for Rare Diseases Marathon Team has grown from a grassroots team of four to this year’s record-breaking team of more than 100 runners. Over the years, the team has raised nearly $500,000 for the National Organization for Rare Disorders (NORD) and is committed to bringing awareness and support for all 7,000 rare diseases.
Each runner also partners with an individual rare disease patient, getting to know them, their family, and their disease community. These partnerships are more than symbolic; they are the beating heart of the team, and the patient partners are just as much members of the team as the runners.
As awareness of the team’s mission has grown exponentially, more and more individuals have been inspired to use running as a platform to connect with the rare disease community and spread the word about rare diseases. Last year, the Running for Rare Diseases Team participated in three events:
- The Boston Marathon (April 20, 2015)
- The Providence Marathon (May 3, 2015)
- The Providence Half Marathon (May 3, 2015)
The team is composed of dedicated runners from around the world who will not only spend their personal time training for the marathons throughout the frigid winter months, but also host numerous events to raise funds and engage people in the cause.
At the end of 2013, we announced that all the funds raised for NORD will support the Genzyme/NORD NIH Undiagnosed Diseases Program (UDP). As many rare disease patients must endure a long odyssey before finally receiving an accurate diagnosis, the entire Running for Rare Diseases team is passionate about enabling early diagnosis for those living with mysterious, rare conditions.
Established in 2008, the NIH UDP is the primary national resource for patients and their physicians who have exhausted other alternatives in seeking a diagnosis. Those accepted into the program go to the NIH Clinical Center in Bethesda, MD, where a multidisciplinary team of medical experts seeks to unravel the mystery and determine a diagnosis. The new fund will pay for the medical testing for individuals who cannot afford the basic medical work-up needed to make them eligible to apply for the UDP. We are thrilled to be able to provide this patient assistance program to support patients who have exhausted all other avenues to seek a diagnosis!
Online Silent Auction
The online silent auction is NOW LIVE and will close at 12:59:59 on Friday, May 1, 2015.
Access the auction here: http://auction.runningforrarediseases.org/
New items will be added every day, so check back (and bid) frequently! Please share this link with your family and friends as anyone is welcome to bid on items.
All funds raised through the Running for Rare Diseases Online Auction goes to the NORD/Genzyme NIH Undiagnosed Diseases Program Fund.
If you would like to donate an item to the auction, please email RunningTeam@genzyme.com.
NATIONAL COVERAGE – NBC Sports Network
NBC Sports Group and the Boston Athletic Association have a multi-year agreement for NBCSN and NBC Sports Live Extra to serve as the national television and streaming destinations for the legendary Boston Marathon.
- Sunday, April 17 at 8:00 p.m. ET: Preview Show on Universal HD
- Monday, April 18 from 8:30 a.m. – 1 p.m. ET: Live Race Coverage on NBC Sports Network
- Monday, April 18 at 8:00 p.m. ET: Primetime Replay on Universal HD
For more information, please visit www.nbcsports.com.
Gina Szajnuk was born and raised in Madison, Wisconsin and moved to Salt Lake City, UT, where she serves as the Co-founder and Executive Director for the nonprofit Rare & Undiagnosed Network (RUN). Her three beautiful children, each of whom live with a rare and undiagnosed disease, continue to inspire and motivate her as she fights for clinical whole genome sequencing to be covered by insurance companies. Gina is also undiagnosed. Gina is the Utah State Ambassador for NORD (National Organization for Rare Diseases). She is the Co-founder of the Undiagnosed Alliance as well as the Co-founder of RUNmyDNA, LLC. She served on the Executive Committee for Utah Rare 2015. She is the Committee Chair of Utah Rare for 2016. She is on the Program Committee for the National Ability Center. She graduated with a Bachelor of Arts from the University of Wisconsin – Madison. She is married to the NBA Utah Jazz Assistant General Manager.
