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About

Patient & Community Advisory Council

The Patient Community Advisory Council (PCAC) ensures that the voices and experiences of patients and families help guide the Alliance's work. Comprised of individuals directly affected by complex lymphatic anomalies and isolated lymphatic malformations, the council provides valuable insight into the challenges, needs, and priorities of the community.

Through collaboration, shared experiences, and advocacy, PCAC members help inform programs, resources, research initiatives, and strategic priorities so that our efforts remain grounded in the realities of those living with these conditions every day.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

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