It started with the joyful news of a baby.
Twenty years ago, Nicole and Stan Karnash called their family to announce the birth of a healthy, beautiful daughter, Noelle. Six months later, though, something didn’t seem quite right.
“Noelle wasn’t looking toward my voice anymore,” Nicole said. “As time went on, I noticed she became—floppy—and missed developmental milestones.”
The couple called their pediatrician, and Noelle was diagnosed as delayed. She received early intervention but wasn’t improving.
With a second baby in tow, Nicole took Noelle to more doctors.
Noelle’s head wasn’t growing at a regular rate, and, at 2 years old, she had picked up a repetitive hand movement, constantly darting from mouth to hair.
“Feeding her became a nightmare because her hands were always in her mouth,” said Nicole.
Nicole and Noelle visited umpteen specialists before a correct diagnosis was made. A doctor stared at Noelle and said, “That movement with her hands—it’s stereotypical of Rett Syndrome.” That was just the beginning.
Getting to Yes
Rett Syndrome, named after the Austrian physician who first described the neurological developmental disorder, is a rare genetic mutation.
Found on the X chromosome, it’s the most severe disorder on the autism spectrum. Characterized by developmental regression, slowed head growth, distinctive hand movements and seizures, the diagnosis was clinical until the gene was discovered in 1999.
Through Rettsyndrome.org, Nicole met Kristy Kramer, a local woman whose daughter also had the disorder. Together, they kicked off the first Strollathon—a 1-mile walk to raise money and awareness—at Harrisburg’s City Island. Since then, Nicole has led four Strollathons, three galas and three Color Runs raising more than $500,000 for Rett Syndrome.
Wait—the Color Run? Yes, Nicole Karnash brought this 5K—one of the biggest races in the country—to central PA.
While playing Bunco one night in 2013, a fellow player mentioned that she had just completed a 5K in Baltimore called the Color Run. It sounded fun and exciting, but Nicole wasn’t sure if they would team up with a charity.
She filled out a form on their website, and they replied, saying that, even though they’re a for-profit organization, they prefer to partner with charities. The charity is paid for volunteers, keeps all sponsor donations and fees, and is eligible to receive money from ticket sales.
Nicole, along with the regional race director for the Color Run, visited the Farm Show complex, HACC, City Island and the Parkview Golf Course in Hershey (now a PIAA cross-country course). They settled on the latter because the adjacent Giant Center had the largest parking accommodations. Hershey, however, was concerned about traffic and the mess from colored cornstarch being thrown about the cross-country course. Ultimately, Hershey said yes, and Nicole’s real efforts began.
Towards a Cure
Starting from scratch, Nicole needed everything—sponsors, publicity, promotion. She also needed at least 200 volunteers for race day to work the gates, check in runners, hand out packets, throw color and toss prizes. Along the way, she had to continue explaining what a Color Run was and what Rett Syndrome was about. She heard the same question from Hershey, her sponsors and her volunteers: Would the tickets sell?
Sales opened, and the run sold out in seven days to 10,000 runners. They added Sunday, which sold out three weeks later to another 10,000.
“I didn’t expect that,” Nicole says.
“I had to be there Saturday morning at 4:30 a.m. with the Color Run people,” she says. “I remember, as the sun was coming up, a gazillion Port-a-Potties arrived on trucks, and then all these people started trickling in.”
She was determined to make the run handicapped accessible. Noelle communicates only through eye-gaze and is locked in a body that won’t allow her to express her needs. Despite needing 24-hour care, she is still a happy, sociable young woman. She enjoys outdoor strolls in her wheelchair, swimming, going to movies and music. However, as Noelle has gotten older, her body has outgrown the kiddie rides and children’s activities she enjoys.
“Fundraising has been the avenue where our family really connects,” said Nicole. “There are so few things we are able to do together, as a family, with a disabled child. We all went tubing over the summer. Oh…it was so hard, but worth every effort!”
After the race, the Color Run guys brought all the girls with Rett Syndrome on stage in their wheelchairs. Nicole addressed the crowd about how the money raised is helping to achieve breakthroughs, including the cure of Rett Syndrome in mice.
Sadly, that following January, Kristy and her family were killed in a car accident in Pittsburgh. Their deaths—and the tragic loss of her mentor—hit Nicole hard. Though stunned, she persevered in her efforts to carry on with a second Color Run. A third event will be held this month.
Charities have called Nicole, asking her what she did to raise so much money. The answer is simple—she has a passion called family. She took her passion to a degree she didn’t anticipate and has no doubt that, one day, she will receive a phone call and hear someone say, “We found a cure.”
The Color Run takes places June 4 and 5 at the Giant Center in Hershey. For more information, visit http://thecolorrun.com/locations/hershey-pa.
To learn more about Rett Syndrome or to make a donation, visit www.rettsyndrome.org.