Meet the Patient Community and Advisory Council (PCAC). It's dedicated to supporting a global community of of CLA patients, medical professionals, and researchers through shared information, networking, and funding. It's mission is to provide a singular advisory voice to assist in our planning and utilization of resources to maximize impact on the CLA rare disease community.
Meet the PCAC:
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Diane Bomberg, Chair
Training Analyst, PCAC Chair, and Mother
Diane is Chair of the LGDA PCAC and a Senior Training Process Analyst with over 25 years in instructional design. Her advocacy began after her son Erik’s KLA diagnosis in 2009. Diane leads with empathy and precision, and enjoys culinary arts and outdoor adventures with her family.
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Jennifer Boyce
Librarian, Foundation Co-Founder, and Volunteer
Jen is an Academic Research Librarian turned office manager, balancing work with family life. After her son’s CLA diagnosis, she co-founded a foundation to support families and fund care initiatives. Jen is also a passionate equestrian and hospital volunteer, proud to contribute to the LGDA community.
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Tony Aguillon
IT Professional, Advocate, and Father
Tony is an Information Technology expert with degrees from Grand Valley State and Michigan State University. He joined the PCAC in 2023, inspired by his son Leo’s diagnosis with a rare lymphatic condition. Tony blends tech skills with advocacy, using smart home tools and photography to support his family and community.
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Amber McCall
Author, Customer Success Manager, and Advocate
Amber is a rare disease advocate and author of Sand Dollars and Swiss Cheese, sharing her journey with GSD. She works in Education Technology and serves her church in communications. Amber enjoys historical fiction, home décor, and a faith-centered lifestyle with her husband, son, and their dog.
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Kayleigh Harper
Project Manager, Advocate, and CLA Parent
Kayleigh has spent over a decade advocating for her daughter, who lives with Complex Lymphatic Anomalies. With a background in media and project management, she brings extensive experience in patient engagement, research, and peer support. Passionate about representing caregiver voices and advancing community-informed research, Kayleigh is committed to making a meaningful impact through the LGDA.
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Kim McIntosh
Pharmacist, Advocate, and CLA Parent
Kim brings both personal and professional insight to the LGDA community. Her son was diagnosed with Generalized Lymphatic Anomaly (GLA) after years of persistent advocacy and research. A pharmacist working in regulation, Kim is passionate about patient safety and committed to helping others navigate rare disease diagnoses. She’s eager to support education, outreach, and the development of clinical guidelines.
