Meet The Board
Paige Fumo Fox
Hometown: Riverside, Illinois
Title: Vice President | COO
1. When you joined the Board, how did you see yourself contributing? Has that changed over time?
I planned to help with communications and find ways to raise money.
I am constantly learning. This board always has another good idea to keep moving forward with our mission, and I’m getting more involved in the day-to-day work of developing programs like the Seed Funding Grant program for researchers.
2. How does KBG syndrome affect you personally?
My husband and I have a son who was diagnosed in 2016, shortly before he turned 11.
3. What would you say to a family dealing with their new diagnosis? What advice would you give?
Learn. Ask questions. Not every health or learning challenge will be because of KBG syndrome, but it never hurts to bounce ideas off the members of the community. Be ready to talk with all your doctors and tell them what you know, because most likely, your doctors will need to learn some things from you.
Also, this is a pretty large spectrum disorder, so don’t panic that you/your child will be hit with all the potential problems. People are affected differently, so take the challenges as they come. Find your support, and remember that there is more to a person than a diagnosis.
4. What do you feel is the most important result of raising awareness about KBG syndrome?
The community of children and adults with KBG, their families, and researchers continues to grow, and people are finding support and answers. Through the Foundation’s Facebook community, we can provide emotional support and information to people living with challenges now. We ask questions of one another, celebrate successes and milestones, and yes, sometimes just vent to people we know will “get it.”
At the same time, I keep looking toward future treatments to make life with this condition easier. Our growing community will be able to contribute their information to – and help spark investment in – research. The more the general public hears about KBG, the more we can raise funds to buy some science.
This is so much more encouraging than when I first learned about KBG syndrome and was told there were only 65 known cases in the world.
5. Where do you see KBG syndrome in 5 years? In 10 years?
I’m so excited and energized by the possibilities. In five years, I honestly see research pointing to treatments that can begin trials. In 10 years, I see treatments starting to work. I may be off by a few years, but I’m really hopeful.
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