Most 11-year-old children are concerned with missing their favorite Disney Channel program, acing a spelling test, or making a junior-high sports team. Ellie White is not most 11-year-olds. She suffers from a rare genetic disorder, Wolfram Syndrome (WS), but she has not let this disease define her. She is a dancer, a musician and a scuba diver. Ellie has been on “America’s Got Talent” and recently took part in the Broadway debut of “Elf the Musical” (yes, the one based off Will Ferrell’s classic holiday film). Her next big adventure, though not on such a grand stage, will take place right here in Wilmington.
Thursday, July 11th, our own port city will welcome Ellie for the second year as she attends a a fund-raiser for The Ellie White Foundation for Rare Genetic Disorders. The foundation was created in 2012 by Ellie’s mother, Beth, as a way to increase funding for research of WS. There will be cocktails, dinner and a silent auction at Manna (123 Princess Street). Guests can as early as 6 p.m. for a 7 p.m. dinner.
Though the dinner is sold out, guests are welcome to come for cocktails and the silent auction early to help the cause (winners will be announced after dessert).
Wolfram Syndrome only affects around 1 percent of the population. Beth White, who also happens to be a genetic engineer, explains: “The symptoms that commonly occur in the syndrome [are] Diabetes Insipidus, Diabetes Mellitus, Optic-nerve Atrophy, and Deafness.” Ellie is now suffering from all four symptoms. With no cure, the average life-expectancy of a patient is only 30 years of age.
“Ellie is very brave about her diagnosis with Wolfram syndrome,” White says. “She understands the severity of the diagnosis and knows what to expect. She has decided to live life as fully as she can for as long as she can.”
The Whites are hopeful about the future and finding a treatment that will help patients. “Ellie’s foundation has raised enough money to start an endowment for research being done by Dr. Urano’s group” [of Washington University] White says. “His research holds so much hope and, with proper funding, partially thanks to the money we raise here in Wilmington, there will be a treatment, which will benefit these children. Hopefully, he will be bringing us some good news in this regard at the dinner.”
As a scientist, White has first-hand knowledge of the industry. She says knowing about what can and can’t be done, and the in and outs of the treatments and cures, is both encouraging and frustrating.
“Due to Dr. Urano’s diligent work, Ellie has a line of stem cells that were generated from her skin cells,” White tells. “They can be manipulated into nerve cells or other varieties of stem cells to test different compounds on, leading to drug therapy that could halt the progression of the symptoms. This research will benefit many other diseases, too.”
White is excited about the local fund-raiser and the possibilities of what it can help achieve. It is thanks to filmmaker and former Wilmingtonian Jocelyn Leroux that the Whites first came to the city. Leroux met Ellie through her work with Ellie’s dance group, the Silhouettes (featured on “America’s Got Talent”). Ellie inspired Leroux to create a documentary about victims of Wolfram titled “A Light in the Shadows.”
The film follows the lives of four families coping with Wolfram, and chronicles their advancements and trials associated with researching the disease. “A Light in the Shadows” is in the final stages of production, and all four families featured will attend the dinner on Thursday. Through Leroux, Manna proprietor Billy Mellon became involved in the Whites’ struggles. Long-time friends, Leroux turned to Mellon host the fundraiser last year. Since, he has worked continuously to help the fight against WS.
“The foundation began shortly after last year’s dinner,” Mellon says. “We were asked by Ellie’s mother, Beth, to organize a dinner in Boulder, CO (where Ellie lives), in 2012, [and] we created the board after dinner in the lobby of the hotel we were all staying in.”
Another port-city resident, Jill Maguire, serves on the board with Mellon. “I met the White family at the fund-raiser at Manna last year,” Maguire shares. “I was deeply moved by Ellie’s story and her positive attitude and wish to help others.”
The pair is excited to see how well the event does this year, given a few more weeks of planning. On Thursday, there will be a silent auction and dinner. The auction will feature of variety of items, from bottles of fine wine and a “Taste of Raleigh” package from celebrity chef Ashley Christensen (Poole’s Diner, Beasley’s Chicken and Honey, Chuck’s, Fox Liquor Bar), to yoga sessions and teeth whitening, to pieces of art by ACME artist Michelle Connolly and more. Mellon assures the items will not disappoint. All monies raised during the evening will go to benefit the foundation’s work. White is touched by the generosity.
“Thanks to the hard work of some of Wilmington’s lovely people who volunteer countless hours and joined our board of directors, we are growing in our ability to raise awareness and funding for this valuable research,” she comments.
White encourages those who cannot make it to the event on the 11th to visit www.elliewhitefoundation.org and www.alightintheshadows.com to help support the foundation and to learn more about Ellie’s story. People may donate online or they may also mail checks to the Ellie White Foundation, PO Box 7074, Golden, CO 80403. She says she is inspired by Ellie everyday, and knows Ellie will inspire the people of Wilmington again this year.
“Ellie feels as if she can leave her mark on the world by showing people that it is not the quantity of life you have but what you do with your time.”
Ellie White Foundation Dinner and Silent Auction
July 11th, 6 p.m.
Manna • 123 Princess Street