School-Based Health Caregivers Raise Funds for Families Navigating Rare Disease

Caregivers in Bassett's School-Based Health Center (SBHC) Program started their 2023-24 school year with compassion and generosity by raising money to support families grappling with a rare genetic disorder. Their "Jeans for a Cause" event invited SBHC employees to make a small donation to the Team Sanfilippo Foundation and wear blue jeans during their annual SBHC meeting this past fall. Traci O'Donnell, the ambulatory office assistant at SBHC who organized the event, estimates that between 60 and 70 employees participated, raising a total of $330.

These funds were then added to the proceeds of a larger demolition derby fundraiser called "The Sanfilippo Smash" held in Otsego County each fall where O'Donnell volunteers.

Between the two events, Central New York raised $82,819 for Team Sanfilippo.

Sanfilippo Syndrome is a genetic metabolism disorder. Children who inherit a faulty gene from each parent are unable to break down certain carbohydrates. As a result, molecules that are usually essential to the body build up in the brain over time. Eventually these children experience serious, debilitating problems, and most pass away between the ages of 10 and 20.

Although rare, Sanfilippo is truly devastating for children and families that experience it. O'Donnell saw this first hand after serving as a home caregiver of a child with Sanfilippo.

"This disease is heartbreaking to watch as it takes its toll on these amazing kids," she says. "That small but mighty 8-year-old little girl, who sadly passed away in 2019, taught me more about life than any other human ever could. She taught me how to enjoy the little things in life and that there is no such thing as too many pictures. She taught me to laugh as much as you can and to make memories with those you love and never take the days you have on this earth for granted."

The Team Sanfilippo Foundation supports Sanfilippo parents by connecting them with others who have experienced their struggles. It also invests money into research aimed at finding new therapies to treat the disease.