This year, the Arkansas chapter of the Children’s Tumor Foundation will host the 10th anniversary of their largest annual fundraising event.

The Arkansas chapter of the Children’s Tumor Foundation will host the 10th anniversary of Dancing with Our Stars on Thursday, September 7, at the Little Rock Marriott Ballroom. The event will include a cocktail hour and a brand-new lineup of dancers competing for the trophy, as well as a look back at previous competitors.Proceeds from the event benefit the Arkansas chapter of the organization, which comprises a local group of volunteers, an advisory board of directors, a chapter president and a representative of the national Children’s Tumor Foundation. The Arkansas chapter aims to support the national foundation’s mission, as well as to support Arkansas families affected by neurofibromatosis. It provides patient support services, sponsorship for teens to attend an international neurofibromatosis camp and support for local neurofibromatosis clinics.

Proceeds from the event benefit the Arkansas chapter of the organization, which comprises a local group of volunteers, an advisory board of directors, a chapter president and a representative of the national Children’s Tumor Foundation. The Arkansas chapter aims to support the national foundation’s mission, as well as to support Arkansas families affected by neurofibromatosis. It provides patient support services, sponsorship for teens to attend an international neurofibromatosis camp and support for local neurofibromatosis clinics.Neurofibromatosis, also known as NF, is a term used to describe three different genetic disorders: NF1, NF2 and Schwannomatosis. Each condition causes tumors to form on sensitive nerve tissue throughout the body. These tumors can be present anywhere in the nervous system, including the brain, spinal cord and nerves. While most of the growths are benign, they can become cancerous. In addition to cancer, the disorders can cause complications such as hearing loss, vision loss, bone abnormalities, disfigurement, learning impairment, cardiovascular problems and severe pain. Surgery can help ease symptoms, and some patients take medications to control pain.

Neurofibromatosis, also known as NF, is a term used to describe three different genetic disorders: NF1, NF2 and Schwannomatosis. Each condition causes tumors to form on sensitive nerve tissue throughout the body. These tumors can be present anywhere in the nervous system, including the brain, spinal cord and nerves. While most of the growths are benign, they can become cancerous. In addition to cancer, the disorders can cause complications such as hearing loss, vision loss, bone abnormalities, disfigurement, learning impairment, cardiovascular problems and severe pain. Surgery can help ease symptoms, and some patients take medications to control pain.

Children and young adults are most likely to be diagnosed with neurofibromatosis, a lifelong disorder that affects all sexes and ethnic groups equally. It’s more common than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined; it occurs in one in every 3,000 births.

The Children’s Tumor Foundation is the leading nonprofit organization dedicated to fighting neurofibromatosis and the largest non-government funder of NF research. The foundation’s mission is to improve the health and well-being of individuals and families affected by neurofibromatosis.

The foundation was invited to participate at the Biden Cancer Initiative summit created by former Vice President Joe Biden because their model mimics what the Biden Cancer Initiative is trying to accomplish. The research conducted by the Children’s Tumor Foundation is already recognized and well-received in the scientific community. For the first time, a drug is exhibiting good results in shrinking tumors in NF patients. The drug is currently in phase II of clinical trials. Tumors in NF patients don’t typically respond to treatment. The Children’s Tumor Foundation is also planning for a future in which there are approved drugs for the treatment of NF, and thanks to programs and initiatives like Dancing with Our Stars, the foundation is one step closer to achieving those goals.
“Purchasing a ticket has a direct impact on combating NF by providing camp scholarships, emotional and social support for families and children with NF and funding promising research that provides a great sense of hope for us,” says Lesley Oslica, president of the Arkansas chapter.

As the mother of a child with NF, Oslica knows firsthand the impact of Children’s Tumor Foundation on NF research and initiatives. Each member of the advisory board and the entire committee for the Arkansas chapter are volunteers aiding in the effort to raise awareness and support for NF programs. Last year’s Dancing with Our Stars event alone raised $227,000. A statewide total of $350,000 was raised via all events and fundraisers. In the last 10 years, the Arkansas chapter has raised $1,500,000 for Children’s Tumor Foundation.
“Events like this provide families with a great sense of hope because the research being generated from these funds is critical right now,” says Oslica. “Children’s Tumor Foundation is very collaborative in their approach and methods to get research to advance as quickly as possible.”

Each year at Dancing with Our Stars, a child with NF, known as an NF hero or NF ambassador, appears as a special guest whose goal is to educate attendees on the importance of social programs for those with NF. The international NF camp, which costs $1,000 for each attendee, seeks to provide a place of refuge for these children, who find it difficult to attend camp and build friendships. Unfortunately, it’s also an expense that many families cannot cover. Last year’s event raised enough funds to send 30 children to camp.

This year’s event has paired each star with an NF hero who will join one of their stars at a dance lesson before the event. The night of the event, a short video of the NF hero and their star at their dance practice will be shown, and the NF hero will be there that night to thank them in person for dancing for them.

“Our main focus is raising awareness and funds for NF,” says Oslica. “An awareness of a disorder tends to increase support for the disorder. NF is very common and yet most people haven’t heard of it. Some of our leading philanthropists and community leaders who are well respected in turn generate respect and support for the organization.”

Special guests at this year’s Dancing with Our Stars include Wendy Cook, owner of Big Rock Yoga and the founder of Big Rock Outreach; Carla Emanuel, wife of Dr. Peter Emanuel, who is the director of the University of Arkansas for Medical Science (UAMS) Winthrop P. Rockefeller Cancer Institute and a cancer research advocate; Terry Masching, a financial adviser and the principal owner of the Masching Financial Group; D.J. Williams, NFL star and former tight end for the University of Arkansas and Green Bay Packers; Steve “Wildman” Wilson, outdoorsman and radio host; and Dr. Suzanne Yee, physician, author, speaker and recipient of numerous awards and recognitions in the medical profession.

Many know Steve “Wildman” Wilson through his radio program “Call of the Wild.” Wilson retired from the Arkansas Game and Fish Commission after 37 years with the nickname “Wild Man” and was soon after inducted into the Arkansas Tourism Hall of Fame and the Arkansas Game and Fish Foundation’s Outdoor Hall of Fame.

“Billy Douglas is a dear friend of mine whose grandson has neurofibromatosis,” says Wilson. “He asked me to be a part, and I said, ‘Hey, I’ll do whatever I need to do, even if it means dancing.’ The only dancing experience I have is when a swarm of yellow jackets get after me. I’m like a fish out of water doing this, but that’s OK. As I live my life I see how blessed I am and how unfortunate some people are through no fault of their own, and any way I can help someone that is less fortunate, I’m willing to do it.”

Voting is now open at ctfarkansas.org. A $10 donation covers the cost of one vote and rises in increments of $10. ($100 covers 10 votes.) Sponsorships are also available and count toward votes. On the night of the event, guests will also have the opportunity to vote from their smartphone. Tickets can be purchased online at join.ctf.org/dwos2017.

Christen Pitts (center) is the choreographer of the children’s dance this year.

Neurofibromatosis ambassadors Miles Coven (left) and Myleigh Marshall practice their dance for Dancing with Our Stars.


Photography by Jamison Mosley


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