Our Board of Directors
Co-Founder & President
Rachel Heilmann is a NARS1 Mama who watched her daughter, Rory Belle, fight NARS1 until it took her life. She obtained her Doctorate of Pharmacy from West Virginia University (No, she did not know Susan in Pharmacy School) and completed two years of pharmacy residency training. Currently, she is transitioning from a Clinical Pharmacy Management position from a large healthcare system.
This organization was founded to extend the life of Rory Belle through awareness and research of the NARS1 disease. She has combined forces with this awesome team and families around the world to change the impact NARS1 has on kids and their families; to change the outcome they were born with to one they can choose.
Co-Founder & Vice President
Teri DeClercq is a mom on a mission to fight the NARS1 disease for her son. She graduated from the University of Minnesota with a Bachelor's degree in Marketing and has spent most of her career in Merchandising and Project Management at a major retail corporation.
Susan Holsclaw - Secretary
Judy Kjelstad - Director of Development
Catherine Riggs - Director of Patient/Family Engagement
Kit spent a decade living and working in Colorado as a Clinical Pharmacy Specialist. She recently moved back to her home state of Pennsylvania where she’s traded in her white coat for work gloves and is now working in regenerative organic agriculture.
Kit is a friend of Rachel and Rory Belle. For her, being involved in the Rory Belle Foundation is a way to honor the memory of the wonderful Rory Belle while also raising awareness and supporting critical NARS1 research.
Chris DeClercq - Treasurer
In his spare time, Chris enjoys sports of every kind - watching, playing, and coaching. He likes to enjoy Minnesota winters and summers outdoors, taking trips to the cabin, and spending time with his two sons and extended family.