Meet the Board Monday Questions

Name: Tracy Kuznik​
Hometown: Plymouth, Indiana​
Title: KBG Board Member​

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

When my daughter was first diagnosed the foundation had yet to be created.  I was searching for answers to help my daughter and found our now CEO Annette Maughan.  When I joined the board I was willing to help in anyway possible. I was first interested in helping to create our world location map. I enjoyed learning where patients were located and keeping track of their locations.  I wanted to be able to connect families together with one another. Over time I’ve found myself eager to help families get the support they need for themselves and their children. From guiding them through services and equipment to answering questions about our past experiences with our daughter.  With my husband in the military we moved around quite a bit, 12 different homes to be exact, so we’ve seen a ridiculous number of doctors and specialists throughout the years. With so little research available it is vital that we connect with one another to share our resources and our experiences. ​

2. How does KBG Syndrome affect you personally?

My daughter Katelyn was diagnosed with KBG Syndrome in 2015 at the age of 3.  Katelyn has a complex medical history and requires the care of many specialists as well as 24 hour care from me.  We travel for speciality care for my daughters needs, sometimes for a month at a time.  Every aspect of myself has changed into becoming the best mom, caregiver and advocate for my daughter that I can be.  KBG Syndrome affects every aspect of my families life but it has also allowed us to become stronger, more resilient.   ​

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

You will be your child’s greatest advocate. Do not stop fighting to get the care and answers that you need. Even when the doctors tell you “take your child home and love her as she is and stop looking for an answer, it won’t change anything.” Yes, a neurologist said that to me.  We are all here to guide you and support you. See a ENT and get yearly hearing screenings. See a neurologist to get a baseline EEG.  If something concerns you get it checked out by a specialist. We love you and consider you family, even though we just met. We are here for you anytime you need advice, have questions or just need someone who will understand the journey.

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

Knowledge.  Knowledge is powerful and can change the level of care that we all receive from our specialists and doctors.  I can’t tell you how many times I’ve seen a specialist that has not heard of KBG Syndrome.  Actually I can’t tell you of a single doctor that I’ve met to care for my daughter that has. With awareness comes understanding and research that our specialists and doctors need to care for our children and ourselves.

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

In 5 years I pray that we’ve raised enough awareness that our doctors understand our complex children and their needs. That we have researchers testing orphan drugs for KBG Syndrome. And also that we can know what symptoms to expect based on the type of mutation and the location affected in the ANKRD11 gene. 
In 10 years I pray there are treatments, as well as a cure, available for all affected by KBG Syndrome that so choose it.