Butterflies, ballerinas, and abstract flowers are featured among the winning artwork of this year’s Rare Artist contest, hosted by the EveryLife Foundation for Rare Diseases to heighten awareness about rare disease communities and salute the creativity of its members.
Awardees will be able to display their art and share their stories at the Rare Artist Reception on July 22 in Washington, D.C. The reception is part of Rare Disease Week on Capitol Hill, held this year from July 19 to 22. Last year’s event drew more than 900 caregivers from around the country. The winning artwork will also be featured at various patient and industry events.
Thirteen works in three age groups were awarded this year from more than 400 submissions: $100 was given for winning artwork in the 4-to-11 age category, $250 in the 12-to-18 age category, and $500 in the 19-and-older group. All mediums, including painting, photography, and digital art, were accepted and due by last October.
Winners in the youngest group include 5-year-old Ella Palinchak for her work, titled “Happy Flowers in Tall Grass.” Palinchak, who has Alagille syndrome, received a life-changing organ transplant when she was 18 months. The abstract painting — a multicolor work created with washable paint and a plastic fork — is a tribute to her organ donor who is unknown to her.
“The forks dipped in paint made dimensional shapes that reminded me of happy ‘flowers,’ ” states a brief narrative that accompanied her work and was submitted on her behalf. “Choose to celebrate the gift of life. I smile bright, laugh myself silly, and cherish the unconditional love of my family and friends.”
In the teen category, Sarah Dillon, 17, won for “Behind the Eye,” a painting of one of her eyes that features two butterflies along the brow. Dillon has thyroid eye disease, which causes dry, watery, red, or bulging eyes, and problems with vision.
“After 5 years of living with the pain caused by this disease, surgery gave me my life back,” wrote Dillon in her submission. “Butterflies symbolize the thyroid gland as well as my new life, and this painting of my eye represents my journey.”
For her work, Sophia Sieber-Davis, 29, won for “Stage Transition,” an acrylic painting of two ballerina-type dancers just before they enter the stage. Sieber-Davis was diagnosed with Friedreich’s Ataxia at 13 and osteosarcoma at 19.
“One of my favorite subject matters are dancers, probably because I yearn for their physical grace,” she wrote in her statement.
Other winners in the children’s category are Branden Lim and Georgia Markellou. The other three teen awardees are Sarah Donoughue, Arthur Oliveira, and Ben Cavanagh. In the adult segment, other winners include Melinda Habingreither, Nicole Thrower, Ruofan Gu, Amy Curran, and Timothy Chambers. Go here for all the winning artwork and stories.
Established in 2010, the annual contest is open to patients, caregivers, physicians, friends, or anyone else who is connected with the rare disease community. In the U.S., a disease is defined as rare when it affects fewer than 200,000 residents nationwide at any given time. The program is made possible with support from Sanofi Genzyme, Acceleron, Horizon Therapeutics, and the American Society of Gene Cell Therapy. This year’s contest opens June 1.
The EveryLife Foundation uses science-driven public policy to advance the development of treatment and diagnostic opportunities for rare disease patients.
Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
