In 1982, 2-year-old Kelly Rouba was diagnosed with juvenile rheumatoid arthritis. Over 300,000 children have it but when Kelly was diagnosed, the treatment options were limited and the regimen of baby aspirin that doctors prescribed, did more damage to Kelly's young body than good. It wasn’t until she got to college that she began to accept and “embrace” her situation. Now at 29, this New Jersey native is a powerful advocate for kids and teens on behalf of the Arthritis National Research Foundation (ANRF) and the author of Juvenile Arthritis: The Ultimate Teen Guide. She's also a former Ms.Wheelchair New Jersey.
How do you describe your work? "Being an advocate for people with disabilities is something I do throughout all facets of my life. In my full time job, I work with an emergency management consultant based in New York and a lot of what the firm does is centered around people with functional and access needs, to make sure this population is included in planning and not forgotten. I work on those issues during the day and outside of work, I do a lot of advocacy as well. I’m on the board of Project Freedom and they create barrier free housing in New Jersey. A lot of people don’t realize, you can join the disability community at any time."
What three adjectives best describe you? "Determined. Reliable. Passionate."
Cats, dogs, birds … describe your pets? "I have a dog, a Maltese who is sleeping next to me. She really cheers me up and keep me in good spirits."
Favorite season? "Summer. I feel better and can swim and it’s good for my joints."
Name a city you’d love to visit. Why? "I am dying to visit Los Angeles - first and foremost. ANRF is based in that area and Helene who is the Exec. Director calls herself my West Coast mom. Derek, who is her son, is amazing. He’s become one of my best friends. I tell him, you’re one of the best friends I’ve never met!"
What’s the best thing about being single? "I’d have to say the freedom to pursue the things I’m interested in. I do a lot of advocacy and community service so by being single, I’m able to pursue those things."
Describe your ideal “Girls’ Night Out.” "Manicures, massages and martinis! Pampering and a good cocktail is always great."
What’s the nicest thing a friend (or friends) have done for you? "I’m turning 30 at the end of April and so everyone has been saying, `are you having a party?' I decided to organize a benefit and ask people to come and instead of bringing a gift to make a donation to the ANRF's Kelly Award. My friend is the GM of Gallagher’s Steakhouseand she’s donating the space, the buffet dinner and I can have up to 200 people! Helene is flying out and there is an amazing baker flying out from Utah. My friend Angela is flying out from Atlanta because she’s a chef. Everybody is willing to support this by giving donations or a service and I’m thrilled."
What do you do for “Kelly" time? "Sometimes I don’t feel like there is a lot of that. I’ve committed to setting aside more time for myself. Tonight I’m going to dinner with a friend and hanging out with another later. My mom and I are going into New York to a Broadway show."
What’s the best advice you ever received? "My mom has a lot of pearls of wisdom. She’ll give me quotes on paper. One thing I really like was, when one door closes another one opens. You just have to keep focused on the future and not get discouraged."
What quality do you admire most in a man? "Honesty."
What quality do you admire most in a woman? "Someone who keeps active."
Who are your real life heroes? "I have a lot. When I competed nationally at the Ms. Wheelchair America Pageantin 2007, I met a lot of them. They all have different levels of ability but they’ve achieved so much and could still run circles around people who don’t."
What is your guilty pleasure? "Chocolate."
What is your biggest fear? "I think one of the things that does weigh on me is knowing someday I’m going to die and not have been able to do even the most normal activities, go running or water skiing, dancing, ride a bike. Some of these things I was able to do when I was little. If I’m blessed enough to get married, I can’t walk down the aisle. Unless we have some miraculous cure, I might never be able to do that."
If you could change one thing in your past, what would it be? To be more of an advocate for myself at a younger age. There are things I didn’t do because I didn’t speak up. I wanted to go to a college in New York but my parents were fearful of letting me go so far and strongly pushed me to go to a state college and you can’t go backwards. They actually apologize for that. I’ve worked in New York. I’ve done it and they know I would have."
Other than your own talents, what talent would you most like to have? "I wish I could sing."
What is your motto? Or what words do you live by? "One piece of advice that I give and live by is that I really believe in planting as many seeds as possible. Not every seed may grow, but some of them will and the effort will be totally worth it. I really believe that you need to try and plant as many seeds as possible and not just sit back and wait for things to happen. All too often you wait for things to come your way but you need to get out there and be proactive."
To make a donation to find a cure for juvenile arthritis, visit www.curearthritis.org.