Video Included
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!
Steve is highly respected for his expertise and tireless commitment to finding treatments and cures for vision-robbing retinal diseases. 
As the Foundation's senior science writer, Ben writes science and research articles for the Foundation’s website, newsletters and Eye on the Cure blog. 
As the Foundation's senior writer, Rich writes and edits content for all of the Foundation’s print and online publications, including its blog, Eye on the Cure. 
Just to let everyone reading here know, Advanced Cell Technology treated their first patient in Cohort 2 (100K of RPE cells derived from hESCs) at Wills Eye on Wednesday. She is the sixth patient treated in their SMD clinical trial to date, and all of the others have shown vision improvement following treatment. To read more, please follow this link: http://bit.ly/MmIRqg
Thanks for sharing with us and the readers Irv
This is very inspiring. I was just diagnosed with Stargardt’s last year at 28 and seeing her master pageantry, something I love, is such a powerful showcase of determination and faith. I wish her the best and hope she wins!
Dawn, thanks for posting. We agree that it is truly inspirational what Connor is working towards. Unfortunately, she did not make it past this round to become MISS USA but we already know that Connor is going to go on and do great things – no crown necessary!
I too have Stargardt’s. I’m sorry to hear of your diagnosis, but so many advances are on the way. I was diagnosed at 14. I am 36 now. I love this story is out and center stage!
Thanks for your support Jessica
SALUTI DA ITALIA. http://www.facebook.com/pages/Sindrome-di-Stargardt-Italia/145788722257226