The Team Behind The Rory Belle Foundation
Our Founders
Rachel Heilmann
Co-founder and Scientific Advisor
Board Member at Large
Rachel Heilmann is a NARS1 Mama who watched her daughter, Rory Belle, fight NARS1 until it took her life. Prior to Rory's life, she was a residency-trained, board certified, Clinical Pharmacy Specialist in a large health care organization. Following a research fellowship in rare disease, she now currently works full time in rare disease for the MED13L Foundation and COMBINEDBrain.
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.
Teri DeClercq
Co-founder and Chair, Board of Directors
Director of Development
Teri DeClercq is a mom on a mission to cure NARS1 disorder for her son. She graduated from the University of Minnesota with a Bachelor's degree in Marketing and works at a major retail corporation. As a mother of a child with NARS1, she has seen the daily hardships and stress it can put on a family. She hopes to help other families that receive a diagnosis with support, information and reassurance that the foundation is working hard on treatments. Teri enjoys traveling, golfing, being outside, and spending time with her two sons.
Our Team
Kit Riggs
Executive Director
Board Member at Large
Kit is from Pennsylvania and is a friend of the NARS1 community. The Rory Belle Foundation is her daily dose of hope that a few passionate and dedicated people really can make positive change in the world! Kit brings her experience as a Clinical Pharmacy Specialist and a nonprofit Operations Manager to her work with the foundation. In her free time, Kit enjoys spending time with her husband and dogs, traveling, and growing things!
Lauren Anderson
Secretary, Board of Directors
Lauren is from Massachusetts and holds both a bachelor’s and master’s degree in Biomedical Engineering. She works as a Quality Engineer in the medical device industry. As a sibling of an adult with NARS1, Lauren is passionate about raising awareness and driving research for this rare condition. In her free time, Lauren enjoys crafting, hosting themed parties, and spending time with her three kids and two dogs.
Ross McCarthy
Director of Patient and Family Engagement
Ross is from Ireland and is a dad to one of the kids with NARS1. He works as Director for Cloud Operations and Engineering in a multinational food manufacturer and holds a degree in Business Management and a Masters in Supply Chain. He is a massive advocate within the RBF international community. In his spare time, Ross is a keen F1 supporter and loves anything with an engine. He enjoys Gaelic Football and Hurling.
Chris DeClerq
Treasurer, Board of Directors
Chris is from Minnesota and graduated with a Bachelor's degree in Accounting, a minor in Finance, and a Master's Degree in Business Taxation. He is a licensed CPA who has worked in both public accounting and private equity industries. He is a father to a child with NARS1 disorder and lives and breathes the implications of this ultra rare disorder every day. He enjoys sports of every kind, Minnesota winters and summers, and spending time with family.