Marshfield Man with PANDAS Trains for Cohasset TRI

MARSHFIELD, Mass. – On June 25th, Gino Vitelli, 20 from Marshfield, will be part of a three-person relay team that will ride 12.1 miles, run 3.2 miles, and swim .25 miles to raise money for the treatment of a condition he has suffered with for more than half of his life.

In 2011, the then nine-year-old Vitelli woke up one day to find he could not brush his teeth, tie his shoes, add two numbers together, or control his own thoughts. For years, while Gino behaved in a regressive manner, suffered from insomnia, Tourette-like tics, and OCD symptoms, his parents, Jennifer and Michael Vitelli, worked diligently to figure out what had happened to their formerly typically developing, good natured, and very smart son.

Few doctors had answers. Many tried to treat the behavioral symptoms rather than the underlying medical causes, sent them down the wrong path entirely, or offered no assistance at all. All the while, the young Vitelli missed out on school and lost years of his childhood while trapped in his own mind and malfunctioning body.

Vitelli’s story is similar to that of up to 33,000 (or one in 200) children in Massachusetts who suffer today from what is now known as Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (P.A.N.D.A.S.) or Pediatric Acute-onset Neuropsychiatric Syndrome (P.A.N.S). Most are misdiagnosed with mental health illness by medical professionals rather than looking for the root cause.

PANDAS/PANS are autoimmune disorders that occur when an infectious trigger creates a misdirected immune response resulting in inflammation of the brain (Post-Infectious Autoimmune Encephalitis). Triggers can include but are not limited to Strep, Mono, Pneumonia, COVID, Influenza & Lyme Disease. The child/young adult begin to exhibit life-changing neuropsychiatric symptoms such as OCD, tics, anxiety, rage, depression, insomnia and deterioration in school performance. Three of the four Vitelli brothers have been diagnosed with PANS/PANDAS.

Symptoms often come on suddenly and always leave families in crisis. More children suffer from PANDAS/PANS in our country than pediatric cancers, but far less is known about the ailments. Effective treatments – which often come in layers, are relatively recent and are extraordinarily expensive – can cost families hundreds of thousands of dollars and go largely uncovered by insurance.

Now a junior at Clemson University where he is studying to become a computer engineer, Vitelli will compete in the Cohasset Triathlon to raise money for the JBC Fund, a local organization that raises money for, and provides information and support to, families whose children suffer with PANS or PANDAS. The mission of the JBC PANS & PANDAS Foundation is to provide hope, health and support to children and young adults suffering from PANS and PANDAS as well as their families. This is done by offering monetary grants to help eligible children & young adults with PANS/PANDAS receive proper diagnosis and treatment. The organization aims to raise $20,000 by being one of the three organizations that are beneficiaries of the triathlon, in which 1,100 people will run, ride and swim for fun and fundraising.

“I’m grateful that I can participate in this event and raise money,” says Vitelli, who aims to raise $500. Today Vitelli is doing incredibly well, he made President's list, runs, is treasurer of his college fraternity, Phi Mu Alpha, and advocates for, and speaks publicly about the need for healthcare funding and insurance coverage for people with rare diseases, including PANS/PANDAS. In 2020, Vitelli testified before the Massachusetts State House, together with his mother, Jennifer Vitelli, who is now the executive director of the JBC Fund and was instrumental in getting legislation passed that mandates private health insurance carriers to cover treatment for PANS/PANDAS.

“Having PANDAS has given me perspective,” Vitelli says. “I would tell my 9-year-old self that things are going to get hard, but to persevere and stick through because you’re going to come out a lot stronger and more knowledgeable on the other side; things are going to end up being okay. There is definitely hope and treatments that undoubtedly work and have been miraculous for me and my brothers. I am competing to raise more awareness for PANS/PANDAS so that people know that even when things may feel helpless, there is a light at the end of the tunnel.” To contribute to Gino Vitelli’s triathlon and raise money for the JBC Fund, click here.

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