Latest updates
The doors open at UF Health
The Isa Elaine Foundation Brain Iron Disorders Care Program welcomed its first patients on July 30, three months after the gift that made it possible.
Carrying family stories to Washington
The Foundation joined the NBIA Disorders Association in Washington, bringing BPAN and childhood-dementia families to the people who shape national priorities.
Research and care, closer to home
A $200,000 gift seeds the Isa Elaine Foundation Brain Iron Disorders Care Program at UF Health's Norman Fixel Institute in Gainesville.
Accelerating BPAN research at Stanford Medicine
A flagship gift launches a first-of-its-kind program to find treatments for BPAN, and insight into adult dementias.
2025 in review: from a promise to real progress
The Foundation’s first full year, a flagship Stanford research fund, a family-support partnership, and what comes next.
A first partnership for families: $50,000 to the NBIA Disorders Association
Standing with NBIA families through the organization that has supported them for nearly three decades.
The people behind the promise
An intentionally small board of family, scientists, and operators, built so nearly every dollar reaches the mission.
Where your gift goes
How the Foundation is built so that 100% of every outside gift reaches the mission.
What is BPAN? Understanding childhood dementia
The rare disease Isa lives with, in plain language, and why research into it matters far beyond one diagnosis.
Why we started the Isa Elaine Foundation
How a devastating diagnosis became a promise, and a foundation fighting childhood dementia.
More updates are on the way as the research advances. Read our latest newsletter (January to June 2026), or subscribe below to stay close to the fight.
Featured coverage.
Independent reporting on the Foundation’s work and the research it funds.
Fixel Institute expands care with the Isa Elaine Foundation Brain Iron Disorders Care Program
UF Health announces the new multidisciplinary program, led by Dr. Bhavana Patel, for children and adults living with NBIA and related iron-deposition disorders.
Isa Elaine Foundation accelerates BPAN research at Stanford
How a $500,000 gift launched the Isa Elaine Foundation Research Fund with Dr. Juliet Knowles.
Two families, one goal: find BPAN treatments
The community of families supporting Dr. Knowles’ BPAN research at Stanford.