Rare Disease Report

The EveryLife Foundation Announces 2015 Rare Artist Award Winners

JANUARY 26, 2016
Rebekah Harrison
The EveryLife Foundation announced the winners of the 7th annual Rare Artist Contest Awards and the art is beautiful. The foundation received over 275 entries this year
The Rare Artist Awards was established in 2010 to exhibit the unique gifts of individuals affected by rare diseases and to promote the expression of their stories through art. All rare disease art is showcased on the Rare Artist Website.

About the Awards

The awards were split into categories including Children, Teen, Adult, Digital & Photography and Special Artistic Merit. Pieces selected as award recipients or for special artistic merit awards will be displayed at our new Rare Artist Reception, held in conjunction with RDLA’s Rare Disease Week in Washington DC. Artists with works chosen for this reception will also be eligible for travel stipends through The EveryLife Foundation for Rare Diseases Rare Giving program, awarding artists the opportunity to see their work displayed on Capitol Hill.

Two prizes will be awarded in each category: Children (4-11): $100 gift card, Teens (12-17): $250 gift card, Adults (18+): $500 gift card, Adults- Photography/Digital Art: $500 gift card.

The Winners

Olivia Shapow- “Triumphant Tiger”: Olivia is 10 years old and loves drawing and painting. She titled this drawing “Triumphant Tiger”, because she is triumphing over her rare disease of PCD, Primary Ciliary Dyskinesia.
Aedan Pio Pascual-Malvar- “Planets” Aedan is 4 and has clival Chordoma and is slowly losing his eye sight but that does not let him from stopping painting his dreams. He has been wanting to be an astronaut since he was 3 and started watercolor painting when he was 3 years and 10 months. He says he dreams of planets and paints them so he can share them to the world.
Brielle Jefferson- “Calling All Hands, You Can Be One” Brielle is11 years old and lives with Ehlers Danlos Syndrome. EDS causes Brielle body pain, dizziness, fatigue, headaches, nosebleeds, injuries more. But she doesn’t let EDS get in the way of enjoying life the best way she can. She works very hard to get good grades and cheer for her school. Her artwork is a call to raise awareness for this disease in hopes that one day there will be a cure.


Scott Marshall- “Bird with Cherry Blossoms”: Scott is 14 with Chronic Recurrent Multivocal Osteomyelitis (CRMO). He has had this disease for 4 years. Tt is an auto inflammatory bone disease.
Alexa Kanarowski- “Endure”: Alexa is15 with postural orthostatic tachycardia syndrome (POTS). This painting represents how the body must endure symptoms, but the mind is free to be elsewhere. Art is not only Alexa’s passion, but also escape from my disease.

Megan Howard- “Screaming in Pain”: Megan created “Screaming in Pain” to visually express the pain and release the emotions related to living with chronic illnesses. She is a 30-year-old female, andlives with multiple conditions, including: Behcet’s Disease, Neuro-Behcet’s, Fibromyalgia, Autonomic Neuropathy, Multiple Neuralgias, etc. She has suffered a great deal of pain and hardship, yet have developed an appreciation and gratitude for life.
Karen Landrigan- “Roaring”: Artist’s Note: The ocean’s unconquerable roar. It excites me and I hear the words of Invictus*—“I am the master of my fate: I am the captain of my soul.”

Digital & Photography:
Monique Wilson- “Parlee Beach”:  Artist’s Note: Having MdDS makes photography both challenging and rewarding. This image was shot this summer on the East Coast of Canada at Parlee Beach – Shediac New Brunswick. It is the warmest beach north of the Carolinas and where I spend most of my childhood and teenage years.
Richard Briseño- “Missing You
Artist Special Merit:
Chelsie Geib- “The City of Toronto”- Artist’s Note: I’m Chelsie, I’m a 37 year old Canadian made lady with MEN2b. In my books, it’s the cooler disease name out there! It’s actually Multiple Endocrine Neoplasia type 2b. It effects mostly my endocrine system, causing cancer to grow on all the encocrine system glands over my lifetime. Right now I have medullary thyroid cancer. For everyone with MEN2b, life is different. I am fortunate to be a stay at home mom and have a lot of time to cook, rest and stay healthy and paint.
Kam Redlawsk- “I Don’t Want to Be an Inspiration Today”: Kim is a 36 year old HIBM (Hereditary Inclusion Body Myopathy) patient, advocate, writer and artist. She illustrates moments and thoughts on living with such a rare and debilitating condition.
Rory Thorburn- “Frightened”: Rory is 16 years old and his mother found out this year that she has Spontaneous Coronary Artery Dissection (SCAD). She has had two SCADs this year. It’s been a very scary and worrying time for Rory because so little is known about this and most doctors have never heard of it. Rory is frightened it might happen again.

Alvia Rose- “Cheeseburger”: Artist’s Note: I have Ehlers-Danlos syndrome, craniocervical instability, postural orthostatic tachycardia syndrome, RSD/CRPS, epilepsy and more.
Emily Acevedo- “Bright Eyed & Bushy Tailed”: Artist’s Note” “Bright-eyed & bushy-tailed” is a piece I did to illustrate what it’s like to take on all the monsters in your head and still keep a straight face. This piece is dedicated to my nephew, Sebastian Acevedo, who sheds light on Emanuel syndrome, finds a way to defy odds, push expectations and bring his family together. And his mom who despite everything, can keep a strong resolve for her kid. Seby, I love you both very much!
Congratulations to all the winners! 

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