Leadership & Partners
ERDC is led by patients and care partners who know firsthand what it means to navigate a rare disease diagnosis. Every decision we make is rooted in that lived experience.
Our Story
Founders
The patients and care partners who started it all.
Sarah Jones
Co-Founder
Diagnosed with EGPA, Sarah has spent 25+ years leading nonprofits and healthcare programs. She holds dual master's degrees and channels both professional expertise and personal experience into advancing rare disease advocacy and policy.
Pam Squires
Co-Founder
MSW, BA in Education, and former Registered Radiation Therapist. With 25+ years in social work navigating complex healthcare systems, Pam brings professional insight and personal urgency as care partner to Sarah and co-founder of ERDC.
Board Members
Experienced professionals who bring clinical, legal, and advocacy expertise to our mission.
Carol Jones
Licensed registered nurse with 40+ years of experience in asthma education and clinical practice. Consultant to the American Academy of Pediatrics, medical editor for the Allergy and Asthma Network, and currently serving as a Faith Community Nurse in Tucson, Arizona.
Karin Hoelzer
PhD, DVM. Senior Director of Patient Advocacy at BIO and former Senior Director of Policy at NORD. Expert in rare diseases, health policy, and regulatory affairs. Editor in Chief of a major peer-reviewed biomedical research journal.
Donna Behler McArthur
Over 50 years in nursing including 40 years as a Family Nurse Practitioner. Holds an MS in Nursing from Vanderbilt and a PhD in Nursing from the University of Maryland. Currently holds adjunct clinical professor positions at Vanderbilt and the University of Arizona, with a focus on adults living with ALS.
Roni Byrne
JD, Associate City Prosecutor in Tucson, AZ. Originally from Israel with a legal degree from the UK, Roni brings a diverse perspective and deep commitment to underserved communities. Her personal experience with chronic disease informs her strategic focus at ERDC.
John Stadler
MA, 45+ years in business and software development. Diagnosed with Microscopic Polyangiitis Vasculitis (MPA), John founded an online Vasculitis support group spanning 11 countries and 7 continents, logging over 5,000 hours of patient support calls.
Cristina Ospina, MD
Neurologist in private practice specializing in movement disorders. Active in NIH and pharmaceutical clinical trials throughout her career. Advocate for exercise and complementary modalities in patient care.
Laure Larkin
Retired leader in the medical device industry, former head of Stability Science for Johnson & Johnson Ethicon. Diagnosed with Granulomatosis with Polyangiitis (GPA) in 2022, she now brings both industry expertise and personal resilience to the board.
Lynette Matson
Decades of experience in software testing, data analysis, and system implementation at Johnson & Johnson. Care partner to her wife Laure, diagnosed with GPA in 2022. Personal experience has deepened her commitment to rare disease advocacy.
Sarah Bouayad
Sarah Bouayad, founder of Medina Creative, brings years of programming and infrastructure experience to mission-driven organizations. Currently expanding into technology strategy, helping teams modernize systems and scale with confidence.
We couldn't do this without them.
Our corporate and advocacy partners share our belief that we are stronger together and that supporting the rare disease community is worth it.
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