Board of Directors
Our board is made up entirely of individuals diagnosed with hypermobile Ehlers-Danlos (hEDS), therefore we understand the unique challenges our community faces. With over a decade of experience running a local support group, we are committed to extending our reach beyond just meet-ups. Our mission is to provide education, support, and accessible genetic testing to ensure that no one feels alone in their journey.
Kellie was diagnosed with hEDS 13 years ago, following her son's diagnosis. Driven by a desire to understand the condition, she became an advocate and immersed herself in the workings of both adult pediatric medical communities. Recognizing the lack of support and resources available, she was determined to make a difference for the community. For over a decade, she has been leading a support group, and alongside Emily, they identified that the high cost of testing is the biggest hurdle for adults.
Kellie has experience as a PTA President, chaired fundraising committees and been a special needs advocate. She and her husband Brian have two sons.
Emily was diagnosed with hEDS 12 years ago. Throughout her journey of surgeries and sub conditions she has learned so much about connective tissue disorders and the struggles the community faces. The first few years after receiving the diagnosis was very difficult as there was not much knowledge or support. After building a support group with Kellie, we realized we wanted to do more for the community.
Emily is a graduate of Sullivan University. She and her husband, Austin have two daughters.
Doug was hEDS diagnosed in November 2021 at age 45. Father of two, one mildly HSD, the other hEDS diagnosed in August 2021.At last, a lifelong of being different finally made sense. Doug is a Mechanical Engineer and has applied that mindset to learning about connective tissue disorders and discovering what works for him. He is dedicated to using that knowledge to help and educate others in our community.
