Especially Beautiful Fashion Show Raised Awareness For World Rare Disease Day

06 Mar Especially Beautiful Fashion Show Raised Awareness For World Rare Disease Day

UC Irvine and Photographer Bob Hodson Highlight Beauty of Children and Teens with Rare Diseases

FOOTHILL RANCH, Calif. (March XX, 2014) –The UC Irvine Division of Genetics and Metabolism partnered with Costa Mesa photographer Bob Hodson on March 2 for the 1st Annual ‘Especially Beautiful Fashion Show’. Children and teens with rare diseases from the local community showcased the essence of their beauty on the catwalk to raise visibility for World Rare Disease Day and fund research for the UC Irvine Division of Genetics and Metabolism.

Children from the local Orange County community modeled Rove Clothing on the catwalk for more than 125 attendees at Peppino’s in Foothill Ranch. These models joined their friends Cali, 15, and Ryann, 4, showcasing strength and the unique personalities that help them live with the daily struggles of rare disease.  Bob Hodson photographed the event, partnering with the Spooner family to capture the joy in these young girls. Through the support of the UC Irvine Division of Genetics and Metabolism, oversized photos of the girls from a photo shoot in February were stationed around the room to highlight the gorgeous side of rare disease for attendees to see.

“The Especially Beautiful Fashion Show truly embraced the belief in rare beauty and was able to raise awareness for our cause,” said Cristy Spooner. “We brought members of the community together to aid rare disease research and to demonstrate our support for other families with similar experiences. The fashion show achieved its main goal, to showcase how being rare is in fact so beautiful.”

Cristy and Rick Spooner with Dr. Virginia Kimonis (middle) Photo Courtesy of Bob Hodson

Dr. Virginia Kimonis from the UC Irvine Division of Genetics and Metabolism and Dr. Dan Cooper from the UC Irvine Department of Pediatrics spoke at the event to educate attendees about the lives of people with rare diseases and about the research that was started to find a cure based on Cali and Ryann Spooner. The Spooner girls are two of four individuals worldwide to suffer from the rare genetic disease now known as mitochondrial complex 1. Last year, as a result of Exome sequence testing, the Spooner family discovered answers they have long been seeking – a diagnosis and vitamin cocktail to give the girls a better quality of life. A new research project headed by Dr. Kimonis is currently underway to find a cure.

Currently, there are 7,000 identified rare diseases and 350 million people worldwide who are affected by a rare genetic disease. The National Institutes of Health estimates that 50 percent of people affected by rare diseases are children, and 95 percent of all rare diseases do not have a single FDA approved drug treatment, making the work of researchers and innovators critical in finding treatments and cures for all affected patients.

For more information about the event visit www.Facebook.com/Spoonerfund, view their heart-felt documentary “The Life We Live” at www.TheLifeWeLiveDoc.com and visit Cristy Spooner’s blog www.spoonerbrain.blogspot.com or support rare disease research at http://www.uadv.uci.edu/SpoonerFund/.