UtahRare/RUN/Aware of Angels 2018 Photo Project.

Utah Rare 2018 Photo Project

Utah Rare and RUN have always been so supportive of the Aware of Angels dedication to raising awareness for those who are rare and/or undiagnosed using photography. They believe that individuals are more than just their disease, they are beautiful, strong and they have so much to go through everyday. The annual collaboration between AOA, RUN and Utah Rare has brought so many people together, with fun photo shoots, priceless memories, the chance to share stories, and a “day off” for those who suffer with tremendous medical conditions. This year, Utah Rare wanted to spotlight some of the adults in our community. I loved the idea (mostly because I have worked with children and rare disease) and thought it would be an awesome opportunity! So when preparing for these photo sessions, I kind of had an idea in my mind of doing something a little different. I tried to put myself in the shoes of an adult living with a rare/udiagnosed disease, suffering daily, being a parent, holding a job, attending college and I was overwhelmed just at the thought of how hard this must be. I have a special needs daughter and know that things can be rough but I tried to imagine what it would be like to have her and also deal with so many medical conditions of my own-it was suffocating. So, in my mind I pictured doing photo sessions that reflected this, the drowning, hopeless, overwhelmed, day to day lifestyle these adults must deal with. I went to the sessions with certain images in my mind that I wanted to try, and they were moody, full of contrast, black and white, serious and guess what?  I couldn’t have been more wrong about what to do. This group was full of light, optimism, fun, they’re strong, fighters and grateful. If a mother can lose 3 of her children to rare disease, suffer herself with a rare disease and be completely full of light, I needed to share that.  The following posts will be the stories and a handful of photos from their sessions.

My only regret this year was that we didn’t have time to do more photo sessions.  -Season

Thank you to everyone who was involved in these sessions, especially the participants!  Julie Jackson Stylist, Cosmetology by Kilie, Utah Rare, RUN, and Persnickety Prints.

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About the author


Gina began working tirelessly as an advocate for the rare and undiagnosed diseases community several years ago after her and her family moved to Utah. She is the Co-founder and Executive Director of the Rare and Undiagnosed Network (RUN), Chair of Utah Rare, and Utah Ambassador for National Organization on Rare Diseases (NORD).

Gina is currently undiagnosed and the mother of three children with an undiagnosed genetic dysfunction. She is advocating for clinical whole genome sequencing covered by insurance companies and hopes to help rare and undiagnosed families emotionally and financially.

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