Research and care change children's lives. So do the decisions made in Washington, where childhood dementia is still largely unseen. For an ultra-rare disease like BPAN, the families living it are often the only ones who can explain what is at stake, and why it cannot wait.
Most recently, the Foundation traveled to Washington with Amber Denton, president of the NBIA Disorders Association, to carry the experiences of BPAN and childhood-dementia families directly to those who set national priorities. Christopher Lazzara, Isa's father and the Foundation's founder, met with U.S. Representative Gus Bilirakis (FL-12) to discuss the need for greater awareness, recognition, and research into BPAN and the wider group of childhood-dementia conditions.
In his words
“I recently had the opportunity to meet with Christopher Lazzara and a representative of the Isa Elaine Foundation to discuss their important work advancing research into BPAN... I am grateful for their advocacy, courage, and commitment to raising awareness and accelerating research. Stories like Isa's remind us of the importance of investing in medical innovation and supporting families facing rare diseases.”
Why advocacy is a pillar
The Foundation works across three fronts: research, family care, and advocacy. On the advocacy front, the goal is to make childhood dementia impossible to ignore: to improve how it is recognized and classified across health systems and national data, and to expand research funding and clinical-trial access for these conditions. Meetings like this one put real families behind those goals.
Every family who tells their story makes the next child's diagnosis a little less invisible.
This is a part of the Foundation's promise: to keep carrying these stories where decisions get made, and to stand with families until childhood dementia can no longer be overlooked.