Carly’s son Mason received his NEHI diagnosis in March 2013. She has first-hand experience with the difficulties of the diagnostic process and the struggle of all the unknowns associated with this rare disease. Through her previous engagements within the rare disease community, Carly has seen that research for NEHI and other children's interstitial lung diseases is underfunded. The need for treatments and cures becomes larger every day as more children are diagnosed. In 2017 she founded the NEHI Research Foundation to take her passion for helping those diagnosed and put it into action. She is dedicated to advocacy, family support and most importantly funding research to overcome the unknown and bring hope for better tomorrows for all the families living with these rare diseases.
Carly has a Bachelor of Arts degree in Psychology from the University of Oklahoma and has served on multiple committees and boards of non-profit organizations supporting funding for medical research, patient advocacy, and education. When Carly isn’t working with the NEHI Research Foundation she focuses her time on her family and is involved in her children’s school.
Hometown: Quincy, Illinois
Hobbies: Tennis, crafts
Carly is happiest when: Spending quality time with family and friends