Blog
Defined by Humanity
Reflections from the Raregivers Leadership Conference
by Melinda Atnip and Allie McFadden
Representing Our Community — and Ourselves
As caregivers, care partners, and staff leaders at the Histiocytosis Association, we — Allie and Melinda — carry both mission and lived experience. In January, those two worlds met in a powerful way. We were invited to attend the Caregiver/Care Partner Raregivers Leadership Conference hosted by Raregivers at the historic Barrett Family Ranch in Orange, CA. Led by Cristol Barrett O’Loughlin and guided by Dr. Laura Riordan, the retreat centered on the six stages of the Raregivers Emotional Journey Map — a framework designed to better understand and support the emotional realities of rare caregiving. We went representing our community, but we also went representing ourselves. Little did we know, we were stepping into a home filled with love, resilience, and the heart of a family who had turned their grief into a sanctuary for others.
A Home Transformed by Love
At first, we weren’t sure what to expect. But the moment we entered the home, it became clear this was more than a venue — we were being welcomed into their world. The Barrett Family Ranch is surrounded by horses, equestrian rings, and the marks of decades of hands-on work, yet it’s true beauty lies in the love and intention woven into every corner. Phyllis, who still lives there, embodies the mother of all raregivers. Her warmth and presence set the tone for the weekend, making us feel embraced rather than observed. What initially felt like stepping back in time quickly revealed itself as something sacred: a home transformed into a place of healing, honoring three boys whose lives were far too short and the parents who carried the weight of loving them.
Raregivers was born from Cristol Barrett O’Loughlin’s lived experience. As a young girl, she watched her parents navigate years of palliative caregiving after losing her three older brothers — Randy, David, and Jared — to Mucopolysaccharidosis type II (Hunter Syndrome). The emotional, physical, and mental toll was immense, and there were no structured emotional wellness services to guide them. Out of that absence — and out of profound love — Raregivers was created to transform support for rare families, especially Rare Mothers™, who serve as the primary caregiver in 82% of rare households.
It was only later that we learned how Richard, the father, had shaped the very home we were walking through. A skilled carpenter and woodworker, he poured his energy and grief into ceilings, walls, nooks, and outdoor spaces. The house became a living testament to resilience — crafted in love, sustained by a mother’s presence, and opened to strangers like us to bear witness, reflect, and heal.
From the first moment, walking through the ranch, we felt the energy of the weekend — a sense of trust, intentionality, and space for caregivers to breathe.
A Weekend of Reflection
Through equine therapy, sound baths, yoga, shared meals, and reflective workbook exercises, we experienced a purposeful emotional reset. This was not a typical conference; it was a carefully designed space for caregivers to exhale, reconnect with themselves, and explore the realities of their journey. The statistics shared were sobering — 10,000 rare diseases, 350 million people impacted globally, half of them children, and one-third not reaching their fifth birthday. Science is advancing, but emotional support is not keeping pace.
From Vision to Heart
One of our biggest takeaways was witnessing the scale of Raregivers’ vision in action. Their workbook — developed with extensive research and care — has already been translated into 15 languages, with a goal of reaching 300, placing emotional support tools into the hands of healthcare professionals worldwide.
We were honored to participate in filming their public service campaign, The Rare Truth. The experience included both group filming and individual interviews with each of us — Allie and Melinda — where we shared our personal caregiving journeys. It required vulnerability and brought forward deep emotion. At one point, we even joked with each other about our “ugly cry faces” that the world may soon witness when the public service announcement rolls out later this year. It was a powerful reminder that caregiving is not just a role we serve in — it is a story we carry.
At the close of the weekend, we received our certificates of completion — a moment that symbolized not just attendance, but commitment. Standing with fellow caregivers, holding those certificates inside a home built by a father’s hands and sustained by a mother’s strength, felt profound. We had leaned in. We had done the work. And we were leaving equipped to bring this emotional framework home. Phyllis Barrett’s warm, heartfelt hug reminded us of the depth of what this program represents — a family’s love made tangible and shared with the wider rare caregiver community.
What Sustainable Caregiving Really Requires
Above all, we were reminded of something caregivers know but rarely prioritize: we do not put ourselves first. The guidebook outlines ten essential practices for sustainable raregivers — taking sleep seriously, spending time in nature, nourishing your body, naming your emotions, asking directly for help, building predictable community support, and more. These are not indulgences; they are survival tools.
Defined by Humanity
We left Orange County grounded, seen, and more committed than ever to bringing this framework to the families we serve. The Barrett family’s story and the love woven into every corner of that ranch reminded us that while we cannot change every diagnosis, we can change how families are supported along the way. Rare disease may be defined by science, but caregiving is defined by humanity and that truth deserves to be heard.