“Creativity takes Courage” – Henri Matisse
In September of 2017, the EveryLife Foundation and rare disease community had a devastating loss with the passing of our dear friend and loyal colleague, Sue Colton.
Sue was a valued member of the EveryLife Foundation team, serving in various roles over four years and helping to build the Foundation into what it is today. She was dedicated to the Foundation’s mission and the patients we serve. Sue’s energy, humor, and unrelenting optimism will forever be missed by her family, our team and the rare disease community.
As Director of Development, Sue cultivated many of EveryLife’s programs. The Rare Artist program held a special place in her heart, as she had a great appreciation for art and the creative spirit. The Sue Colton Merit award was established in 2017 in honor of Sue.
How does it work?
Sue Colton’s family picks one awardee each contest year in honor of what they think would have been Sue’s favorite.
Who is eligible?
Anyone who is connected to the rare disease community who has a Facebook account. Past awardees are welcome to enter again, but participants are not able to be awarded two years in a row.
Children – Sue Colton Memorial Merit Award
I drew this lion in my drawing class with chalk, but I didn’t like the sound that the chalk made on the paper. The lion is very strong and young and is laying in the grass. I drew the mouth and nose making an upside-down heart. I have not drawn a lion before and I never drawn with chalk. I love animals and hope someday I can see a lion in real life.
I’m Anna, I’m 13 years old, and I was diagnosed with Hypermobile Ehlers Danlos Syndrome, Dysautonomia, and OI. The awareness symbol for EDS is the zebra, and that’s what inspired my painting. The title of this piece is “Dazzling”, since a group of zebras is called a dazzle. I hope that this painting can inspire other rare disease warriors. Thank you!
Sue Colton Memorial Merit Award
I have a rare autoimmune neuromuscular disease called CIDP(chronic inflammatory demyelinating polyneuropathy) that affects your peripheral nervous system. My left hand is completely paralyzed and I have limited motion in my right hand. I have enough strength in my right hand to use a computer mouse and I use voice to text to talk. I can’t hold a pencil or paint brush so I paint with my mouth. It also affects my legs and ankles. I have drop foot on both feet and I have to wear braces to walk. I did a stem cell transplant three years ago and I’m the first to do it for my disease in my home state of Colorado. I’m doing much better now and I’m out of my power chair and walking with brace. The odds of getting CIDP is one in 100,000. It’s similar to MS, ALS and is the chronic version of GBS. I’ve had this disease for 15 years but I only started painting this way since 2015.