Elke Namola
Elke is an active member of CAN. From helping host a youth virtual meet-up for Coats' patients, to being involved in CAN meetings and initiatives, Elke's passion for the Foundation's mission is inspiring!
We caught up with Elke to learn more about her and why the Coats' Ambassador Network is important to her...
What is your connection to Coats’ Disease?
My son, Jaxon, was diagnosed with Coats’ Disease back in 2011 when he was two years old. Our world was turned upside down at first and I was astonished to find out something as simple as a glow in pictures could help save eyesight. I vowed from that point on to spread awareness about Coats’ Disease and the glow in pictures.
Why did you join the Coats' Ambassador Network (CAN)?
I joined CAN to meet others Coats’ families like ours and to connect with them. I wanted to share ideas on things we could do to help spread awareness about Coats’ Disease.
Looking ahead, what are your hopes for CAN?
My hope is to one day find a cure! There is still a lot of work to get there; however, by our continued work with the Jack McGovern Coats’ Disease Foundation and all of the Coats’ families, our goal is attainable. I have seen personally how far the Foundation has come since 2011.
What kinds of things (work and/or hobbies) do you do when you are not volunteering to raise awareness of Coats’?
I work as the Clerk for the Chesterfield County School Board, a school division that has 64,000 students, 67 schools (all 100% accredited), a $965.2M budget, and five School Board members. In my spare time, I enjoy spending time with my family of five; my husband, Jason, and three sons, Jaxon, Colton, & Julian. The boys keep us pretty active between golf, basketball, and hunting!
Who inspires you?
My son, Jaxon, inspires me all of the time. He is completely blind in his Coats’ eye so the things he does on a daily basis that we take for granted are very inspiring. He has overcome so many obstacles in life at such a young age and I couldn’t be more proud of the young man he is today.
What’s something about you that not many people know?
I was the second US state to have Coats’ Disease Awareness Day as August 17th. We live in Virginia!
Do you have a message you’d like to share with Coats’ patients?
You are not alone! We are here fighting this battle with you. Please reach out to one of us for support and to connect, it will do wonders!
