Isabella “Isa” Elaine Lazzara was born in January 2023 in Jacksonville, Florida, the third of the Lazzaras’ four children. She was a joyful baby who loved to laugh, and for a while, life looked exactly the way her parents, Chris and Rachel, had imagined it.
The first hint that something was different came around six months, when Rachel first noticed that Isa’s development was behind where her sisters’ had been. Her pediatrician started monitoring her closely, and by that summer the family had begun physical therapy. By late 2023, the concern had deepened from movement to cognition.
The day everything changed
Two of the country’s leading pediatric hospitals sit in the family’s hometown of Jacksonville, Nemours Children’s and Wolfson Children’s, and they worked in close collaboration on Isa’s care. Just weeks after her first birthday, an advanced infant brain MRI at Wolfson revealed thinning of the corpus callosum and delayed myelination. On February 12, 2024, the genetics team at UF Health confirmed the diagnosis: BPAN, beta-propeller protein-associated neurodegeneration, a rare and progressive form of childhood dementia caused by a change in the WDR45 gene. There was no treatment. There was no cure. The family was told, in effect, to take her home and make memories.
They refused to accept that as the end of the story.
“We were told to take her home and make memories. We chose to fight instead, and to build something bigger than any one diagnosis.”
From heartbreak to a promise
As the family searched for a way forward, the science came into focus. Dr. Marc Fariss, a pathologist and toxicologist who had spent his career developing protective strategies for Parkinson’s and Alzheimer’s, had recently moved to Jacksonville and turned his expertise to Isa’s condition. He identified striking parallels between early-onset BPAN and those late-onset dementias, the same broad failures of the brain’s machinery. If understanding one child’s rare disease could also help children like her, and shed light on diseases that affect millions, the path was clear.
In July 2024, the family established the Isa Elaine Foundation, the public name of Isabella Foundation, Inc., a registered 501(c)(3) nonprofit, with PhD scientists and a dedicated board already in place. The mission was clear from day one: fund the science that can lead to treatments, stand with families living this reality now, and make childhood dementia impossible to ignore.
Those three commitments became the Foundation’s pillars, research, family care, and advocacy, and they still guide every decision today.
Small by design
From the start, Isa’s family committed to personally underwriting the Foundation’s operating costs, so that 100% of every outside gift flows directly to the mission rather than to overhead. It is a small organization built to move money, and urgency, to where they matter most.
That focus showed quickly. Within its first year, the Foundation partnered with the NBIA Disorders Association to support families today, and committed a flagship $500,000 gift to launch the Isa Elaine Foundation Research Fund at Stanford Medicine, work that could lead to the first treatments for BPAN and shed light on adult dementias along the way.
Why “there is a cure”
Clinicians involved in her care believe Isa may be among the youngest patients ever diagnosed with BPAN. She is also the reason a growing community of scientists, clinicians, and families now shares a single goal. The road is long, but the direction is set.
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.