Research takes time. Families living with BPAN need support today, help with the appointments, the equipment, the travel, and the sheer daily weight of caring for a child with a progressive neurological disease.
That is why one of the Isa Elaine Foundation’s very first acts was not a research grant at all. It was a $50,000 gift to the NBIA Disorders Association, the Foundation’s first U.S. family-support partner.
Who the NBIA Disorders Association is
BPAN belongs to a group of conditions known as NBIA, neurodegeneration with brain iron accumulation. For nearly three decades, the NBIA Disorders Association has been a lifeline for the families affected by them, providing education, community, advocacy, and practical resources at moments when families often have nowhere else to turn.
Its reach extends well beyond support. The Association has helped fund more than $2.8 million in research through an alliance that now spans ten countries, connecting isolated families and far-flung scientists around a shared search for answers.
Why this partnership, and why now
When Isa was diagnosed, her family experienced firsthand how lonely a rare-disease diagnosis can be: few doctors who recognize the condition, fewer still who know how to treat it, and almost no roadmap for what comes next. Organizations like the NBIA Disorders Association are how families find one another, and how hard-won knowledge passes from one family to the next.
Standing with that work is central to who the Foundation is. Funding the science is the long game; supporting families is the promise we keep in the meantime.
Fund the cure for tomorrow. Stand with families today. Both have to happen at once.
What comes next
This first gift is a foundation to build on. Going forward, the Isa Elaine Foundation plans to expand direct support for families toward the things that quietly make life possible: specialized equipment, home adaptations, travel to specialist clinics, and respite for exhausted caregivers.
Every dollar given to the Foundation goes further because Isa’s family personally covers operating costs, so 100% of outside gifts reach the mission, including the families this partnership serves.