Artists to share their stories with Congress during Rare Disease Week
(Washington, D.C., January 15, 2020) The EveryLife Foundation for Rare Diseases today announced the award recipients of the 2019 Rare Artist Contest. The contest, now in its 10th year, was established to exhibit the unique gifts of individuals affected by rare diseases and to promote the expression of their stories through art. Fourteen pieces in four categories were awarded this year out of more than 400 submissions, the most in the contest’s history:
Children’s Category: Chloe Hoover, Winter’s Night; Hannah Heinrich, The Northern Lights; Gracie Hensley, Missing Pieces.
Teen Category: Lauren Yu, Baseball Memories; Shaniah Barry, You Can’t See My Pain; Mariah Fisher, Hope Blossoming.
Adult Category: Bryce Czekanski, Out There, Somewhere; Alex Biagi, Aero; Darienne Majeske; Transformation from Fragile (X) to an Unbreakable Spirit.
Adult Digital/Photography Category: Jennifer Virag, Starry Burst; Jen Arnold, Resilient; Dona Krystosek, Rare Reflection; Elizabeth Hoverman, Life in a Raindrop; Belinda Silva, Flight of Hope.
For a full view of the awardee’s artwork and patient stories, please visit RareArtist.org.
Each awardee will have an opportunity to display their artwork and share their story at the Rare Artist Reception on February 27th at the Hart Senate Office Building, Room 902 in Washington, D.C. The reception is part of Rare Disease Week on Capitol Hill 2020, an annual event which draws more than 800 patients and caregivers from around the country. The Week’s main focus is to convince Congress to take action to change the face of rare disease diagnosis and treatment forever. Visit rareadvocates.org/rdw for more information.
Among this year’s awardees is Alex Biagi of Colorado. Alex has a rare autoimmune neuromuscular disease called CIDP (chronic inflammatory demyelinating polyneuropathy) that affects the peripheral nervous system. Alex paints by holding a pencil or paint brush in his mouth, because the disease paralyzed his left hand and severely limits his ability to use his right hand.
Dona Krystosek of Mississippi was honored for her photograph of her son who has Jansen’s Metaphyseal Chondrodysplasia (JMC), an extremely rare disorder characterized by unusually short arms and legs, short stature and progressive stiffening and swelling of the joints. There are approximately 20 known cases of JMC worldwide.
Seven-year-old awardee Gracie Hensley, from Utah, never met her two older sisters who both passed way from congenital diaphragmatic hernia. In her artwork, Gracie represented herself and her younger sister with two hearts above their heads, representing the siblings they lost.
The Rare Artist program is made possible by the generous support of Sanofi Genzyme, Acceleron and Horizon Therapeutics. The 2020 Rare Artist Contest opens June 16th, 2020. Visit RareArtist.org for more information.
About the EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. The Foundation does not speak for patients, but instead provides the training, education, resources and opportunities to make patient voices heard. By activating the patient advocate, the Foundation believes it can change public policy and save lives.