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.
When she is not working, Rachel is answering a million inquisitive questions from Rory's older brother, traveling, camping, making live-edge furniture, trying new breweries, and spending time with her friends, husband, and dog.
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.
As a mother to a son diagnosed with NARS1, she has seen the daily hardships of this disease as well as the stress it can put on a family. To be a member of the RBF means joining a network of people and helping to make progress in the rare disease community. The work of this organization is not just getting us one step closer to a cure, it is allowing for so many children to get a second chance in life. She hopes to help offer information and a plan for families who receive this diagnosis in the future.
When she isn't being a full time mom or working her day job, she keeps busy with kids activities and trying to see friends. She also enjoys trying new restaurants, golfing, traveling, and being outside with her two sons.
Susan Holsclaw - Secretary
Susan graduated with her Doctor of Pharmacy degree from West Virginia University and completed a Pharmacy Practice Residency at the University of Colorado Hospital. She has spent her career as a clinical pharmacist. She currently specializes in medication therapy management, which is a form of direct patient education to optimize therapeutic outcomes. She provides these services to patients nationwide working with Outcomes MTM.
NARS1 is close to her heart, as her niece was diagnosed and passed away from the disease at a very young age. The feeling of helplessness as her brother’s family dealt with this diagnosis is something she wishes no other family will ever experience. She hopes that the funds raised through RBF can bring hope to other NARS1 families.
When she is not talking about medications or volunteering her time with RBF, Susan enjoys spending time in the Colorado outdoors with her husband, two sons, and scruffy rescue dog, Ziggy. She also enjoys making things – anything! Halloween costumes, French macarons, hand-knit hats and toys…if it involves working with her hands, she’ll give it a try.
Judy Kjelstad - Director of Development
Judy is a grandmother to a child with NARS1. She is a retired RN who earned a Nursing degree from North Hennepin Community College, and a Bachelor's degree from St. Cloud State University. She had a long, diverse nursing career that included labor and delivery, operating room, sales support, clinical management and clinical research.
Judy has a special connection to her grandson with NARS1 and this foundation. She helped care for him in his early months when he needed one on one care and could not attend regular daycare. She is very motivated to find a cure, not only for her grandson, but for other kids like him. Raising awareness and educating gives her a sense of purpose and hope for every family struggling with a rare disease. When she heard about this foundation starting, she immediately asked how she could help.
In her free time, she enjoys spending time with her children and two grandsons. She also loves golfing, biking, walking, playing pickleball, hiking, traveling with her husband, and spending time with friends - old and new!
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.
In her free time, Kit enjoys hiking with her husband and dog, visiting our awesome National Parks, exploring new cities, learning new skills, and growing things!
Chris DeClercq - Treasurer
Chris graduated with a Bachelor's degree in Accounting, including a minor in Finance, and a Master's Degree in Business Taxation from the University of Minnesota. He is a licensed CPA and has spent his career working for companies both in the public accounting and private equity industries.
He is a father to one of the NARS1 kids this foundation is striving to help, and he lives and breathes the implications of this disease every day. To contribute to this foundation means putting time and effort into a cause that will ultimately change not just his child's life, but the lives of others who are impacted by this disease as well.
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.