What a difference a year makes. Last year, competing in the teen category of the Miss Florida USA pageant, Connor Boss stumbled on a set of stairs while making her way to the stage. Only family and friends knew the reason why. This year, the 18-year-old will compete in the same pageant as an adult. And thanks to ABC’s Good Morning America, she’ll do so as someone known to have Stargardt disease.
A juvenile form of macular degeneration, Stargardt affects central vision and, thus, depth perception. Hence the stumbling. But it’s not holding back Connor, who – according to her mother, Traci – doesn’t want to emphasize that she’s legally blind, for fear of getting pity votes this Saturday.
“She wants to show people that she could do what anyone else does,” Traci told ABC.
And why not? For the last couple of years, the straight-A student and former high-school-class president has been winning pageants strictly on the merits of her intelligence and beauty. It’s a combination the Foundation Fighting Blindness has come to depend on in its spokesperson April Lufriu, another Florida resident who was crowned Mrs. America in 2011, and then Mrs. World several months later.
Not only does April have retinitis pigmentosa, or RP, but her two children and sister have it as well. So she entered the Mrs. America pageant intending to raise awareness about the disease and FFB’s role in funding research for treatments and cures. (For a Q&A in our newsletter, InFocus, see page 5.)
Connor, of course, is a different story. Diagnosed with Stargardt just 10 years ago, at age 8, she’s still learning to deal with her progressive vision loss – by reading large type and struggling to make eye contact, for instance.
But her “15 minutes” – which could turn into 30, maybe even 45 – can help spotlight a disease diagnosed during childhood. Stargardt is also the target of a number of treatments in development, including a gene therapy that just entered a clinical trial.
So, as Connor prepares to take the stage, the Foundation wishes her all the best!