isabella elaine lazzara (ee-ss-a) was born on January 21, 2023, in Jacksonville Florida. The third of three Lazzara girls, Isa had a perfect bill of health for her first six months. In June, 2023, Isa’s parents noticed that Isa’s physical development was slightly behind their other daughters. This did not alarm the parents as their pediatrician was monitoring the situation. In August, physical therapy began in an effort to ensure that Isa stayed on schedule in terms of physical development. The first time the couple discussed their concern about Isabella’s cognitive development was Wednesday, November 15, 2023. Two of America’s top pediatric institutions reside in Jacksonville (Nemours Children’s Clinic and Wolfson Children’s Hospital), and they began working in collaboration. These two institutions were incredible in their collaboration, expertise, and commitment to assisting her. Isa was seen by many of the clinical departments in these institutions, and considerable bpan characterizing data were collected.

A brain mri was performed by Wolfson Children’s Hospital, one of only four advanced infant mri machines in the world, showing a thin of the corpus callosum and delayed myelination. On February 12, 2024, the Lazzaras learned that their daughter was diagnosed with a rare neurodegenerative gene mutation disorder called bpan wdr45.

Dr. Marc Fariss, PhD, had recently moved to Jacksonville. He is a distinguished pathologist/toxicologist who has studied and published on protective strategies for neurodegenerative diseases. His career includes leading academic and private research groups with a focus on curing the most common degenerative brain diseases such as Parkinson’s and Alzheimer’s. He currently serves as President & Principal Toxicologist of ToxSynergy, llc but has now turned his professional activities to understanding Isabella’s condition and to find successful therapies to give her and others like her the brightest future. He has identified numerous parallels between bpan and the major neurodegenerative disorders, Alzheimer’s and Parkinson’s disease.

Currently, Isabella receives annual care at the Children’s Hospital of Philadelphia (chop), one of only two bpan research centers in the United States. Through this clinical partnership, the Foundation remains closely connected to front-line advancements in pediatric neurodegeneration care and research.

After learning about the similarities between early-onset bpan and late-onset Alzheimer’s / Parkinson’s and how understanding his daughter’s clinical disorder might also lead to a cure for other children and major neurodegenerative diseases, Chris and his team began to create a nonprofit foundation known as Isa Elaine Foundation.