Dr. Anne Trussell cultivates support for the Children’s Tumor Foundation throughout the year – promoting awareness for the NF Endurance Team as well as Dancing with Our Stars.
By Jillian McGehee | Photography by Sara Reeves | Hair & Makeup by Mary Catherine Bennett with Stilo Salon
As the Arkansas Chapter of Children’s Tumor Foundation celebrates the 10th anniversary of its signature event Dancing with Our Stars, its continued success provides funding for critical medical research. It’s the commitment of dedicated volunteers like Dr. Anne Trussell that cultivate awareness for the life-changing fundraising efforts that span 365 days a year for neurofibromatosis, a non-curable disease.
Anne, owner of Sei Bella Med Spa, serves on the Arkansas Advisory Board of the Children’s Tumor Foundation. While she doesn’t have a personal connection to NF, she says she and her husband Larry continue to support the foundation because of the “love and friendship” they have with so many families affected by NF. NF is a set of distinct genetic disorders that cause tumors to grow along various types of nerves. It can alter the development of non-nervous tissues such as bones and skin.
Avid running enthusiasts, the Trussells joined the Children’s Tumor Foundation NF Endurance Team for the Little Rock Half Marathon. It was Anne’s first race. Now, she has tracked 48 half marathons, six marathons, two 25Ks and multiple 5Ks. “Every time we run we get asked about NF or the Children’s Tumor Foundation, so it’s a great chance to raise awareness,” she says.
Lesley Oslica, president of the local Children’s Tumor Foundation, notes Anne’s hard-working and compassionate commitment. “Not only has she run with the NF Endurance Team for years and has run thousands of miles, she also began hosting her own ‘Wine & Art’ fundraiser in Conway, raising nearly $15,000 a year. In total, she has raised over $50,000 for NF research,” Lesley says. “As a mother of a child affected by NF, this gives me great hope for a brighter future for those with NF. I am eternally grateful for Anne and advocates like her who help the Children’s Tumor Foundation raise awareness and funds for NF.”
As a local Children’s Tumor Foundation board member, Anne says she enjoys the opportunity to attend national forums as a representative from Arkansas. “It keeps me updated on the latest NF research, allows me to connect with other volunteers to share fundraising ideas and continue to support and bond with NF families.”
Anne adds, “Our CEO, Annette Bakker, is also the chief scientific officer, which brings another level of expertise to the foundation. She and all the staff at Children’s Tumor Foundation are the most enthusiastic, dedicated people I have ever worked with. Everyone I’ve ever met with NF is so grateful for everything that’s done to help find a cure.”
The national board established a large consortium of researchers who freely share information with each other, Anne says, noting that this “is almost unheard of in the scientific world. This benefits not just NF families, but the broader community as well – especially with cancer research.” In Arkansas, there is an NF clinic at Arkansas Children’s Hospital. “We encourage all those with NF to enroll in the NF registry, which helps link them to clinical trials.”
All of these programs and services are made possible by proceeds from Dancing with Our Stars. This gala, coupled with a dance competition, features local business and civic leaders who generate support through online preliminary voting and a performance at the gala. The event has experienced unprecedented success. Last year, Anne notes, the organization surpassed the $200,000 fundraising mark for NF research.
Raising awareness and research dollars remain the primary objectives of Dancing with Our Stars, Anne says. “I love it when we outgrow a venue. Seeing new faces means new people are involved at some level with the Children’s Tumor Foundation. New sponsors are certainly an indication that we’ve done our job to forward the mission to end NF and that others believe in the work the foundation does as well. And as always, our goal is for everyone to enjoy the event and look forward to the next year.”
Vote for this year’s stars – Wendy Cook, Carla Emanuel, Terry Masching, DJ Williams, Steve “Wild Man” Wilson, Suzanne Yee – at join.ctf.org/little-rock/events/dancing-our-stars-2017