Our Story

The Cystinosis Foundation of New Jersey is a small, grassroots nonprofit dedicated to raising awareness and funding research for cystinosis, a rare metabolic disease caused by the abnormal buildup of the amino acid cystine in vital organs, including the kidneys, eyes, muscles, pancreas, and brain. Approximately 2,000 people worldwide are affected by cystinosis, with about 500 diagnosed in the United States. In New Jersey, only two individuals were known to have the disease: Mickey Pugliese, who passed away in 2022, and Dina Lotrecchiano, who continues to fight the disease every day.

In 1980, Carmela Lotrecchiano knew something wasn’t right with her 18-month-old daughter, Dina. After persistently advocating for answers, Dina was diagnosed by Dr. Joan Arboyd—the same physician treating Mickey Pugliese. Recognizing the importance of support and connection, Dr. Arboyd introduced the two families, forming a lifelong bond between the Pugliese and Lotrecchiano families.

Inspired by the founding of the national Cystinosis Foundation in California in 1983, Dina’s father, Gerardo Lotrecchiano, established the Cystinosis Foundation of New Jersey in 1984. His mission was to bring families together, raise awareness, and fund research toward a cure.

More than three decades later, the Foundation remains proudly family-run. Gerardo’s daughters, extended family members, and longtime friends continue his work by serving on the Board. As we approach our 32nd anniversary, we honor Mickey’s memory, celebrate Dina’s life, and carry forward Gerardo’s vision. To date, the Foundation has raised nearly $500,000 for cystinosis research and treatment—an extraordinary achievement for a small nonprofit driven by family, community, and hope.