A strong field of Super Late Models will converge on the Lebanon I-44 Speedway on Sunday to kick off the championship chase for the ARCA/CRA Super Series. While some drivers will compete with a potential series championship ahead, Colorado racer Mark Neff will race for a much bigger cause.
Neff will make the 800-mile trip to Missouri looking to raise funds and awareness for a family friend. Kyle Harrison and his wife Kylie recently were told news no parent wants to hear. Their daughters Kinley and Kennedy were recently diagnosed with a rare genetic disorder, and are now in a race against time to find a cure that could save their lives.
“It’s something that hits close to home, it’s actually my boss’ family. He has two girls, four and seven I believe are their ages, they both found out the day after their daughter was born that they have a rare disorder called Gangliosidosis (GM1), which unfortunately is a rare genetic disorder that is always fatal,” Neff told Speed51. “It’s pretty sad diagnostics and rough on the family, so really their only for helping their daughters and others facing the same thing is to raise awareness, which is not only through financial but also getting the story out and trying to get as much eyes on it as possible to help push some of these trial drugs into fruition and into an FDA approval process.”
According to Genetics Home Reference, GM1 is a genetic disorder that occurs in 1 in 100,000 to 200,000 newborns. The disorder progressively destroys neurons in the brain and spinal cord, and the life expectancy for the type of GMI Kinley and Kennedy have can range from 10-15 years to the early 20’s.
There is a little light at the end of the tunnel currently, with several clinical trials soon to be available. Some experts even believe a cure is imminent, but it needs the support and financial help to move forward.
This is where Cure GM1 Foundation comes in. In just over two months since the Harrison’s started the Cure Kinley & Kennedy GoFundMe page, they have already raised $253,000, but there is still a long way to go.
“They’re a couple months into the start of their foundation and they’ve raised a quarter million dollars the last time I checked, so it’s probably over $250,000 at this point,” he said. “They’re doing all they can to raise awareness and I’m wanting to do my part in all I can. The racing community is big and as close as it is, I’m interested in seeing if I can help them at all by raising awareness.”
Neff is looking forward to getting the cause national exposure on the Speed51.TV broadcast and seeing what the racing family can do to help. He will carry CureKinleyandKennedy.org on the hood of his car with a national audience tuning hand, while also having stickers to hand out to other competitors and fans in attendance at the 3/8-mile facility.
“I’m definitely blessed to do that and to use the platform like the Harrison’s is just phenomenal. It means a lot to me to be able to do that for them and their family with how close they are to me, and to provide something back to them is huge. We’re going to have their sticker on the hood, it’s going to be really cool that people will be able to see it from the broadcast. We’ll have a bunch of smaller stickers that we’ll be able to hand out there. The broadcast will be phenomenal exposure for the family.”
Fans unable to make it to Lebanon I-44 Speedway for the Champion Racing Association doubleheader can watch the event live on the all-new Speed51.TV. Click here to purchase your PPV ticket today.
-Story by: Koty Geyer, Speed51 National Correspondent – Twitter: @kgeyer3