Research | Community | Cure

Meet the Board Monday Questions


Name:Kylie Zehnder
Hometown: Massilon, Ohio
Title: AVP of Marketing

1. When you joined the Board, how did you see yourself contributing? Has that changed over time?


I've always wanted to be someone who could spread awareness, help create products, and organize events to promote awareness. That desire has never changed. We all have off days or weeks but the desire remains.​

2. How does KBG Syndrome affect you personally?


August 10,2016 my beautiful beautiful baby girl was diagnosed when she was three years old. We spent the prior years fighting for tests and answers and we spent hours in hospitals and doctor offices. I've watched my little girl experience so much that no baby or child should have to deal with. Each new symptom or concern was and is a learning experience. As a parent, watching my girl endure so much has lit a fire in me.. a fire to fight for her, encourage her and make others aware so she wouldn't have to feel alone.

3. What would you say to a family dealing with their new diagnosis? What advice would you give?

Don't give up! You're not alone! There's a small community out there who understands and we are fighting for our kiddos. Every heartache, struggle, and achievement, we are here with you!​

4. What do you feel is the most important result of raising awareness about KBG Syndrome?

Our logo, Every Link Matters. Learning that the protein links are affected. Learning how and why , learning what happens when that link is genetically modified vs mutated. The more who know, there is more awareness. The more awareness spread there are more studies and research done. The more research the greater chances of a cure. It may not happen in my lifetime but I do believe a cure can be found. But it all starts with awareness of Every Link Matters.


5. Where do you see KBG Syndrome in 5 years? In 10 years?


Hopefully and prayerfully we are stronger and bigger as a foundation. I envision more fundraisers and events. More promotional items and more research studies done. Hopefully we have a strong team of doctors and professionals who want to devote their time and energy into our foundation, to help bring us that much closer to a cure.