Color for Cure
Updated: Thursday, March 6 2014, 06:52 AM CST
Reported by: Sherry Christian
For 18 years, the Karnash family of Lower Paxton Township, Dauphin county has been living with the challenges of a rare disorder called Rett Syndrome.
It affects almost exclusively girls, by taking away what would be a bright future for their daughter.
But a unique fundraiser is making a difference in their lives by adding a lot of color while raising money and awareness.
Nicole Karnash says, "A cure is on the horizon, I'm not kidding - I know it sounds so far out there, a cure not for generations to come, but for Noelle."
Not many parents of a child with a disease or disability can say that and really mean it.
It's something Nicole Karnash has been hoping for since her 18-year-old daughter, Noelle, was diagnosed with Rett Syndrome - a disorder that affects almost exclusively girls by robbing them of speech, muscles and intellect.
But the reason Nicole can say with confidence a cure is near is because of the breakthroughs that have occurred in just the last 15 years -- including isolating the gene in 1999 and researchers in the lab reversing Rett Syndrome in mice in 2007.
Nicole says, "The technology is there, the bio-medical research is there, it just comes down to time and funding."
Something all great causes can use more of.
But Nicole has really used her time well - and is putting the "fun" in fundraising by bringing “The Color Run” to Hershey.
Nicole says, "It's this fun 5k where everyone wears white and at every kilometer there's a color zone and 25 volunteers are throwing powdered color on you. It’s so much fun!"
“The Color Run” is *for profit* - but there's a fundraising arm to it.
Between the Presenting Sponsor, Pinnacle Health and volunteers -- the International Rett Syndrome Foundation, IRSF, stands to net $100,000 from the 2-day event.
Two days because the first date - May 31, 2014 -- sold out in one week!
Kelly McCall, Pinnacle Health Public Relations Coordinator says, "There'll be 20,000 participants in those 2 days and what a great opportunity to not only raise money, but increase awareness."
Bailey Karnash, Noelle’s 16-year-old sister says, "My lacrosse team is going to volunteer, I have a bunch of friends doing it."
Cami, Noelle’s 13-year-old sister says, "All my soccer team is running."
Stan, Noelle’s father says, "We want to make sure we're doing everything possible to find that cure for Rett Syndrome and allow our girls to walk and to talk and to enjoy their sisters and brothers and friends."
There's no shortage of fun with these siblings -- but Noelle's younger sisters say they get so much more from their sister.
Cami says, "She is the strongest girl I've ever met."
Bailey says, “She's our rock. We're blessed to have her. If we didn't have her, I wouldn't be the person I am today."
“The Color Run” is Saturday and Sunday, May 31 and June 1, 2014 at the closed down Parkview Golf Course next to Giant Center in Hershey.
Registration to run the 5k through “The Color Run” sold out for both dates - however -- there are 400 registrations available that weekend through the International Rett Syndrome Foundation.
And you don't have to run – “The Color Run” will also donate $40 per volunteer who registers to throw the color at the runners.
For more information:
Nicole Karnash: firstname.lastname@example.org