When the Governor Mario M. Cuomo Bridge is illuminated green for PANS/PANDAS Awareness Day on Oct. 9, eight-year-old Jonah will be able to see the lights from his bedroom window.
For his mother, Bianca Gersten, the lighting carries significance after nearly two years of navigating a condition she had never heard of before her son became ill.
Jonah, a River Towns resident, has been diagnosed with Pediatric Acute-Onset Neuropsychiatric Syndrome, or PANS. His illness was initially presented as Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, known as PANDAS.
New York state law defines PANS as a clinical diagnosis involving the sudden onset of neuropsychiatric symptoms, including obsessive-compulsive disorder and/or an eating disorder. PANDAS describes cases associated with streptococcal infection.
For Gersten’s family, the change began during winter break in December 2024.
“Jonah went into that winter break one child, and emerged from it a completely different person,” Gersten said.
She first noticed abrupt changes in his behavior. Over the following months, schoolwork and activities that had previously come easily to him became difficult. The family sought help from multiple medical professionals and explored several possible explanations, but Gersten said none seemed to account for how suddenly her son had changed.
“No one could adequately explain the abrupt change in our son,” she said.
Eventually, a conversation with another parent whose child had been treated for PANDAS prompted Gersten to pursue an evaluation for the condition. Jonah subsequently tested positive for strep and was evaluated by a specialist, who diagnosed him with PANDAS in June 2025.
Gersten said his symptoms can now return when his immune system is activated, and his condition is considered PANS.
The diagnosis provided the family
with an explanation, but it did not eliminate the uncertainty of managing Jonah’s health.
“It’s hard to express the degree to which this disorder has changed our lives,” Gersten said.
She said the family has relied on support from Jonah’s school district, childcare providers and her employer as they adjust to his changing needs. His younger sister has also had to adapt to the additional attention his health sometimes requires.
Gersten describes her son as naturally sweet and gentle and said one of the most difficult parts of the experience has been not knowing when his symptoms may intensify.
The experience has led her to become involved in advocacy for other New York families affected by PANS and PANDAS.
“I need to believe that it will all be for something in the end,” she said. “Spreading awareness of PANS/PANDAS and fighting for insurance coverage makes me feel like I’m doing something when I have often felt completely powerless in watching my child suffer.”
Part of that advocacy centers on proposed changes to health insurance coverage in New York.
Bills A9659A and S10208 were introduced during the 2025-26 legislative session and referred to the Assembly and Senate insurance committees. The measures would require certain health plans to cover medically necessary treatment for PANS when an attending physician certifies its necessity.
Gersten is among parents advocating for the legislation. Her son’s physician has recommended intravenous immunoglobulin, or IVIG, for his particular case, she said, and the family is currently working to obtain insurance approval.
The legislation itself does not require one specific treatment. The Senate bill’s sponsor memo, however, identifies IVIG as one of the more expensive treatments used for PANS and cites the financial burden treatment can place on families.
Gersten said advocates expect the issue will need to be taken up again in the next legislative session.
Alongside the legislative effort is a push for public awareness.
The New York State Assembly adopted a resolution recognizing Oct. 9, 2026, as PANS/PANDAS Awareness Day. The resolution describes the conditions as serious pediatric illnesses associated with sudden neuropsychiatric symptoms and notes their potential effects on children’s education, development and quality of life.
Gersten said she was also informed by the New York State Thruway Authority that the Cuomo Bridge would be included among landmarks illuminated green for the observance.
For a family accustomed to dealing with the condition largely outside public view, seeing that recognition close to home will be meaningful.
“Seeing state landmarks lit up in an effort to shine light on the struggles of PANS/PANDAS families will be extremely validating,” Gersten said, “and will help inspire me to keep pushing for change.”
She hopes increased awareness eventually results in quicker diagnoses, more research and greater consistency in how children with PANS and PANDAS are evaluated and treated.
Her message to other parents is not to diagnose their children themselves, but to take an abrupt and unexplained change seriously and seek medical guidance.
“You know your child better than anyone,” Gersten said. “If it feels like they are no longer with you, keep pushing until you have an answer that actually makes sense.”
For Jonah and his family, Oct. 9 will offer a visible acknowledgment of an illness that has reshaped much of their lives.
This time, that acknowledgment will be visible from his own bedroom window.
