Clinicians involved in her care believe Isa Elaine may be among the youngest patients ever diagnosed with BPAN. That fact sits behind everything the Isa Elaine Foundation did in 2025, its first full year of work, and its most consequential yet.
What follows is a plain accounting of that year: what was committed, who made it possible, and where the work goes next.
Research that reaches beyond one disease
The year’s defining milestone came in December, when the Foundation committed a flagship $500,000 gift to launch the Isa Elaine Foundation Research Fund at Stanford Medicine, in partnership with the Lucile Packard Foundation for Children’s Health. The fund supports work led by Dr. Juliet Knowles to identify potential treatments for BPAN, including a search for FDA-approved drugs that could be repurposed and moved quickly toward clinical trials.
The strategy rests on a simple scientific thesis: BPAN shares a disease cascade, impaired autophagy, oxidative stress, and iron deposition, with adult Alzheimer’s and Parkinson’s. Research for children and research for adults can advance together, which means progress against one rare childhood disease may illuminate diseases that affect millions.
Standing with families now
Because research takes time, 2025 also marked the Foundation’s first family-support partnership: a $50,000 gift to the NBIA Disorders Association, the organization that has supported families living with BPAN and related disorders for nearly three decades. It is the first step toward direct help with the everyday costs of caregiving.
The people and partners behind it
None of this is the work of one person. The Foundation’s operating costs are underwritten personally by Christopher and Rachel Lazzara, so that every outside gift reaches the mission. The work is guided by a board and a scientific team, including Board Member and Scientific Advisor Dr. Lenn Murrelle and, in its earliest phase, Isa’s great uncle Dr. Marc Fariss, and carried forward with partners including Stanford Medicine, the Lucile Packard Foundation for Children’s Health, the NBIA Disorders Association, UF Health’s Fixel Institute, and the Childhood Dementia Initiative.
What comes next
The direction for the year ahead is set: deepen the research at Stanford, expand the care network closer to families in the Southeast, grow direct support for families, and keep making the case for childhood dementia with the people who can change its trajectory.
There is a way. There is a link. There is a plan. There is a cure, and we won’t stop until we find it.