For a rare disease like BPAN, expertise and research cluster at just a handful of distant centers. Isa’s family is in the Southeast, yet the research they fund is all the way across the country, at Stanford. A new investment begins to change that.
On April 30, 2026, the Isa Elaine Foundation made a $200,000 gift to the Norman Fixel Institute for Neurological Diseases at UF Health in Gainesville, seeding the Isa Elaine Foundation Brain Iron Disorders Care Program. The program studies the shared biology that links childhood BPAN with adult Parkinson’s and Alzheimer’s, the same thesis that guides the Foundation’s research at Stanford.
Care for families in the Southeast
The program is directed by Dr. Bhavana Patel, DO, a movement disorders and behavioral neurologist at UF. For the first time, families across the Southeast would be able to reach specialized care without crossing the country, seen by an interdisciplinary team in a single visit rather than sent from specialist to specialist across months.
Why it matters
BPAN compresses into early childhood the neurodegeneration that Parkinson’s and Alzheimer’s reveal late in life, opening a critical early window to intervene. Studying it close to home, in the same institute that cares for adults with related diseases, means discoveries can move quickly between the lab and the families who need them.
Bring the research closer to the families. Open the door to care that used to be a flight away. Both, at once.
At UF, this work is carried out through the Isa Elaine Foundation Brain Iron Disorders Care Program, which supports research and care at the Norman Fixel Institute for iron-deposition diseases like BPAN. You can give to the program directly at UF.
What happened next: the program opened its doors on July 30, 2026 and welcomed its first patients.
You can read more on the program page at UF Health, or learn about the Norman Fixel Institute for Neurological Diseases.