Special to ViewJack Kingston, 9, plays with his mother, Kathy. Kathy Kingston is organizing a walk to raise money to fight tuberous sclerosis complex, a genetic disease Jack was born with.
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The Tuberous Sclerosis Alliance of Nevada will hold its second annual Step Forward to Cure TSC Walkathon at 9 a.m. on April 19 at UNLV, a family-friendly fundraiser that is part of the organization's national effort to raise money for research and support programs.
For Las Vegas resident Kathy Kingston, organizer and founder of the local volunteer branch of the TS Alliance, it will be a busy day and the culmination of plenty of hard work and planning.
But above all else, it will be a day of fun with her 9-year-old son Jack, who was born with tuberous sclerosis complex (TSC).
TSC is a genetic disease causing tumors to form throughout the body. It is as common as amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease) and is almost as common as muscular dystrophy. It is the largest known genetic cause of epilepsy and the second largest identifiable genetic cause of autism.
Kingston, a native of Las Vegas who graduated from Bonanza High School and UNLV and works as an engineer for Clark County, said Jack has a moderate case of TSC.
He has tumors in his brain and autism, which greatly affect his speech. He has had seizures since he was an infant, but these are mostly controlled with medication.
"It could be a lot worse," she said. "We know two girls in Colorado who have had multiple brain surgeries because their seizures are so frequent."
Because of its involvement in multiple organ systems in the body, ongoing research to treat and ultimately cure TSC is considered highly important because it could pave the way for treatments and therapies for cancer, autism, epilepsy, diabetes and obesity.
This is why Kingston and volunteers like her make time to form local branches of the TS Alliance.
"We have over 30 community alliances across the country, volunteer branches of the national organization, and they do fundraising events like the walkathon and also provide support in other ways for families in their area," said Jaye Isham, senior director of communications for the TS Alliance. "They raise about 50 percent of what our organization takes in every year, which is huge. Our budget is about $3.8 million annually now, and that's a lot of fundraising for research and to provide services for newly diagnosed families."
Another essential service provided is a program called Ask the Experts, where the alliance arranges for a physician specializing in treating TSC to speak with a group of families to answer specific questions.
Kingston's local chapter did a smaller version of Ask the Experts late last year.
"We're still pretty new. The idea is to have regular support meetings, but in November we had a conference call with a kidney specialist," she said. "People got to call in and talk to him, and everybody got all their questions answered. We need to do more of those. It really makes a difference to get more information from people who have the most experience (dealing with TSC) and to get families connected with the information they need."
Last year's local walkathon had about 184 participants and "went really well," Kingston said, and this year's event could see anywhere from 200 to 400 people taking part.
But there's one person she knows will be there for sure, and he will be enjoying himself.
"It's a really fun experience for Jack. There's so many things for him to do and see," Kingston said. "He's with people who know him and love him, so he has a great time."
Fun will be part of the plan, but the main point of the event is to create more awareness of the disease.
"It's like any disease in that when a family is diagnosed, it is devastating," Isham said. "To be able to pick up the phone and talk to someone locally who is going through the same thing is invaluable. I have met so many people going through this, and it's amazing, the strength these families have. Some kids who have this disease are just incapacitated, and to deal with that, plus finding the time and dedication to volunteer to help others like (Kathy) is doing, is just amazing."
Over the past five years, walkathons like the one at UNLV have raised more than $2.6 million for the TS Alliance.
For more information, visit www.tsalliance.org or www.stepforwardtocuretsc.org.
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