Board Member & Season Two Guest-Host
she/her/hers/mom/rare disease caregiver
Kristyn Newbern is a mother and caregiver to her son, Luke. Born with congenital heart defects that required immediate life-sustaining interventions and surgical procedures, they later learned that Luke’s heart defect was just one component of a rare genetic disease called Noonan Syndrome. Kristyn and Luke are lovers of space, music, family, and a very special brown dog named Charlotte.
In Season Two, Kristyn is joined by several guests who have had made a lasting impression on her family throughout their complex medical journey. We learn about the life of a cardiologist, unique family planning options, the importance of early childhood therapy services, the beautiful evolution of friendships, the power of love, and the strength of a family unit.
Kristyn is the director of business development at McCarthy Building Companies. She earned her bachelor’s and master’s degree, in engineering management and a certificate in Project Management from Missouri University of Science and Technology (Missouri S&T) in Rolla, Mo.
Kristyn serves on the Patient and Family Advisory Council (PFAC) for the SSM Health Cardinal Glennon Children’s Hospital. In addition, she and her husband, Kevin Newbern, lead the Luke’s SkyWalkers 5K team for the Cardinal Glennon Sun Run, which has raised over $60,000 for the Foundation over the last five years.
Kristyn has been proud supporter of Atypical Truth since before the first episode was ever published. After meeting Erica through the PFAC in 2021, Kristyn was honored to support the podcast and eagerly accepted the invitation to be the first guest-host to spend an entire season exploring supported storytelling in efforts of sharing her journey as a heart and rare disease mom. Since 2022, Kristyn has served as the Board Secretary for the Atypical Truth nonprofit charitable organization.
As noted by Kristyn in Season Two, there are numerous forms of social support, research, and resources for families of children born with congenital heart defects (CHD). The heart itself is such a strong symbol of life, the idea of “broken” or “defective” heart more is universally understood to be a difficult prognosis. However, this is not always the case for the rare genetic disorder that Luke was born with, the disorder that contributed to the CHD.
Kristyn believed it was important to share this side of her story, as it shines light on the complicated journeys of rare disease families. Throughout Season Two, Kristyn shares with us as she reflects on their family’s introduction to the world of rare disease and the difficult decisions that many have to consider once a genetic disorder is discovered, along with conversations with the family, friends, and professionals who support them every step of the way.
Proceeds raised during Season Two were donated to the Glennon Foundation for Cardinal Glennon Children's Hospital.