Sarah Hunt of Jupiter, Florida is an active Patient/Caregiver Member of the Childhood Arthritis and Rheumatology Research Alliance (CARRA). Her family’s journey with pediatric rheumatic disease began when her son, Aaron, developed unexplained high fevers and intense abdominal pain at 6 months old. Initially dismissed as viral infections, his symptoms escalated to emergency visits and frightening diagnostic tests. It wasn’t until they met with infectious disease specialist, Dr. Chad Sanborn, that they were finally steered toward answers. Aaron had a rare autoinflammatory condition similar to PFAPA or SURF, which marked the beginning of a long road of discovery and care.
Determined to understand her son’s illness, Sarah dove headfirst into research, learning medical terminology, gathering questions, exploring treatment options, and eventually traveling to Boston Children’s Hospital to consult with Dr. Fatma Dedeoglu, an expert in periodic fever syndromes. Though Aaron’s case didn’t fit a textbook diagnosis, Dr. Dedeoglu worked alongside the family to develop an effective treatment plan. Today, after years of uncertainty, Aaron has been largely in remission for four years!
Motivated by her family’s journey and driven to support others facing similar challenges, Sarah found a meaningful path forward through CARRA. Since 2019, she has been an active member of the Autoinflammatory Workgroup. Her perspective and contributions—including reviewing grant proposals and helping shape research studies—have helped ensure that CARRA’s work remains grounded in the real-world needs and priorities of patients and their families.
More recently, Sarah brought her professional expertise in finance to her role on CARRA’s newly-formed investment committee, where she plays a strategic role in guiding funding decisions to support research and long-term sustainability. Her dual perspective—as both a caregiver and a financial professional—has made her a unique and impactful voice within the organization.
Attending the CARRA Annual Scientific Meeting in Denver in April of 2025 was a powerful experience for Sarah. Witnessing patients connect with others who share their diagnosis and seeing researchers collaborate face-to-face reaffirmed her belief in the power of collaboration and the vital role CARRA and its members play in driving progress.
Looking ahead, Sarah hopes for a future where families receive faster diagnoses, access to more precise treatments, and experience fewer disruptions to childhood due to rheumatic disease. She sees her role as a bridge between families and the medical field, using her journey to inform, advocate, and contribute to research. She hopes for a future where every child with a rheumatic disease can thrive.
Sarah cherishes the simple, everyday moments with her family—whether they’re traveling, exploring the outdoors, or soaking in the joyful chaos that comes with raising young children. Through it all, their family mantra, “Grateful for every healthy day,” remains a grounding reminder of how far they’ve come and what matters most.
Sarah’s journey is a powerful reminder of why patient and caregiver perspectives are not only valued but essential to every aspect of CARRA’s work. We are proud to spotlight Sarah as a dedicated and inspiring CARRA member and deeply grateful for the meaningful impact she continues to have within our community.
– Bailey Parker, Membership Coordinator
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