RUN had fun in the sun at the National Ability Center
May 17, 2016
Families belonging to the Rare and Undiagnosed Network (RUN) had some fun in the sun at the National Ability Center during the Undiagnosed Day Without Doctors on Saturday. RUN is a nonprofit that offers emotional and financial help to families whose members live with a rare or undiagnosed disease.
It’s co-founder and executive director, Park City resident Gina Szajnuk, said it was a day to remember.
"We wanted to offer an intimate event for families of those suffering from rare undiagnosed ailments so they could bond and network," Szajnuk told The Park Record. "We welcomed families that knew each other and some new families who came as well."
Throughout the day, the families were able to talk about their "diagnostic odysseys" as well as about different doctors, treatments and therapies.
A "diagnostic odyssey" refers to the time, which often spans years, from when a child gets sick to if and when the ailment is diagnosed, according to Szajnuk, whose three children suffer from serious ailments that remain undiagnosed.
"For example, our family has been to seven hospitals in four states and have seen more than 50 specialists, but to no avail," she said. "Our odyssey has spanned more than five years."
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Saturday’s activities started at 3 p.m. and included the National Ability Center’s challenge course, archery, cycling and a dinner catered by two Park City restaurants — Dickey’s Barbecue and Papa Murphy’s Pizza.
"Our major sponsor was Primary Children’s Hospital, which was really neat," Szajnuk said.
The National Ability Center "scholarshipped" the event, which meant it donated the space and time for the event.
"We have been able to develop an incredible relationship with the National Ability Center and getting them to work more with Primary Children’s Hospital," Szajnuk said. "So it was really generous of them to do this for us."
Jeremy Houskeeper, National Ability Center program partnership and development senior manager, said his nonprofit sees a need to help emerging organizations such as RUN.
"Just because the support financially isn’t there, yet, doesn’t mean the need doesn’t exist," he said. "That’s where we’ve been blessed by Park City and other communities, because they have helped us with our own fundraising and scholarship programs so we can support groups like RUN. Serving groups like this is an extension of the generosity of the community we live in."
Houskeeper said the NAC is grateful to RUN and to Szajnuk for her efforts in the undiagnosed community.
"Because of her passion and energy, we’re able to introduce our mission to a greater population," he said.
Likewise, Szajnuk is thankful for the NAC and its mission to help people with all abilities enjoy recreational activities.
"There aren’t a lot of places you can go where you have one child who can’t be active with active siblings," she said. "At the National Ability Center, these children can do everything together."
Nearly 90 people showed up to have fun.
"We had families who have lost their children to rare and undiagnosed sicknesses and we call those children the ‘Rare Angels,’" Szajnuk said. "We also had a couple of single mothers who have non-verbal children, and some new moms whose kids are in the same condition that were able to meet each other and share their stories.
"It is incredible to see these families finally having some fun," she said. "This day became a day to honor the angels, but also to have some fun."
RUN hosted a similar event at the NAC last September.
"The NAC scholarshipped us last time as well and we had  people come out," Szajnuk said. "So, it’s been nice to see that more people are getting involved."
For more information about RUN, visit rareundiagnosed.org.
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