Family of Midlands boy with rare genetic condition to host big race

Family of Midlands boy with rare genetic condition to host big race

COLUMBIA, SC (WIS) - What started as a support page for a Midlands boy with a rare genetic condition called Spinal Muscular Atrophy (SMA) has turned into a local foundation that supports families impacted by childhood diseases.

The foundation is called Leo's Pride, named after Leo Bugenske, and this Saturday the foundation will host its fifth annual Go Leo 2018 5K race at Saluda Shoals Park.

Leo’s parents, who co-founded Leo’s Pride, say the very first race was actually held for them by the community to support their journey when Leo was first diagnosed with SMA.

“It showed us what it feels like to be supported,” said Leo’s dad, Adam Bugenske. “And for the foundation, we felt like we needed to be able to turn around and show that love to other families because of what it did for us in terms of being able to give Leo all the love he needed and being able to get out and have adventures as a family.”

The race is annually timed out with Leo’s birthday and this year Leo is turning five years old. The Go Leo 2018 event is a 5k race, 1-mile family walk and a Lionheart Dash for special and exceptional athletes. All of the proceeds benefit the Leo's Pride Foundation.

“Our whole goal as a foundation is to work on inclusion projects and work on mobility for families like ours,” Adam said. “A big push for us would be getting newborn screenings in place as it relates just to SMA. If we have an opportunity, if it’s impacting one kid, if it’s impacting large populations with inclusion projects- that’s the goal of the foundation.”

Last year because of the race, the Bugenske’s were able to donate $75,000 towards Saluda Shoals inclusive playground project. They say they hope to be able to make another donation toward the project with the funds raised this year. The race will also help support research of SMA and other children and families affected by childhood diseases and disorders.

Registration will start at 7 a.m. at Saluda Shoals on Saturday, Oct. 27. To register in advance or to learn more visit the race website here.

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