Board of Directors
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.
Jonathan is the father of two boys, one of which was diagnosed with NEHI at the age of 15 months. He has been to countless appointments with specialists regarding his son’s disease and knows there aren’t enough resources committed to educating clinicians and developing new treatments for this disease. Jonathan shares his wife’s passion for increased research and knows that it is the best way to bring meaningful change to children affected with this disease.
Kyle is a close friend of a family affected by NEHI and is a supporter of all things associated with improving the lives of those impacted by this disease. He has a kind heart and a mind geared towards action that doesn’t stop until the goal is accomplished. Kyle has witnessed the difficulty his friends have faced in receiving a diagnosis and the constant streams of unknowns that have followed. He is determined to improve the lives of those living with this family of diseases and firmly believes accelerated research is the best path to success.
David is a coach in multiple sports to a young man affected by NEHI. He has seen first-hand the impact NEHI has on this child in athletics and other areas of his life. His commitment and friendship to this patient and family sparked a desire in him to make a difference in the lives of NEHI patients everywhere.