About NYPANS

We are parents who have witnessed firsthand the devastating impact of PANS/PANDAS on our children.

Who We Are

Meet the Team

Elizabeth Cooper

Lizzie knew becoming a single mother by choice in her early 40s wouldn’t be easy, but nothing could have prepared her for what happened next. One of her twins developed severe emotional and behavioral issues in early childhood, and it took more than five years to determine what was wrong. Her daughter’s PANS diagnosis explained it all, and appropriate treatment changed everything. PANS can follow a relapsing and remitting course, and Lizzie was able to leave her career in journalism to stay home during the long periods when her daughter can’t attend school. She is dedicated to making sure all PANS families can get proper diagnoses and affordable treatment for this terrible illness.

Barb Shepard, LMHC

Barb Shepard, LMHC, is a licensed mental health counselor with diagnostic privilege based in Syracuse, New York. A Rochester native, she has served as a pediatric provider for 16 years in the greater Syracuse area, specializing in pediatric OCD, anxiety, and the treatment of PANS/PANDAS.

Barb serves as Strategic Initiatives and Advocacy Lead for MIND (Mental Health in Neuroimmune Disorders) Global Council, an international organization. Additionally, she founded Syracuse’s World PANS/PANDAS Awareness Day chapter and established a partnership between its grassroots advocacy team and the Office of the Chief Disability Officer within the executive branch of New York State government.

A consultant and continuing education trainer at both the state and international levels, Barb is a frequent guest on global podcasts addressing pediatric mental health. Her family’s lived experience with PANDAS first brought her to advocacy work and continues to inform her commitment to children and families affected by neuroimmune conditions.

Marnie Salvatore

After her son’s life was dramatically changed by PANS, Marnie turned her family’s experience into a mission to advocate for children and families affected by this often misunderstood condition. A high school chorus teacher for more than two decades, Marnie brings the same care she gives her students, helping young people feel seen, understood and supported, to her advocacy work. She has become actively involved in New York’s PANS/PANDAS advocacy movement, working with families across the state, building relationships with legislators, and helping advance legislation to improve awareness, recognition, and access to care. Driven by the hope that no family will have to navigate this journey alone, Marnie is committed to creating meaningful change for the next generation of children and families.

Why We Came Together

Our Story

We formed NYPANS to unite our voices, determined to fight for change and ensure that every family dealing with this illness has access to the care & support they need.

We have faced the uncertainty, frustration, and heartbreak that come with watching our kids transform from bright, joyful individuals into children struggling with extreme anxiety, rage, OCD, and other severe symptoms.

Many of us have spent years seeking answers, only to be met with misdiagnoses, endless medications, and mounting medical bills.

The Illness

What PANS/PANDAS Looks Like

Children with PANS/PANDAS might suddenly exhibit psychiatric symptoms, like OCD, anxiety, ADHD, extreme mood swings, or even severe depression and suicidality, often acting out in ways that seem drastically out of character.

Often misdiagnosed

Children with PANS/PANDAS are often misdiagnosed as psychiatric patients.

Standard treatment falls short

Their symptoms do not respond to regular medications and therapies.

Recovery is possible

Many kids experience significant improvement when the immune system is properly managed, and some even recover completely.

What We’re Fighting For

Our Advocacy

Together, we are pushing New York State legislators to hold insurance companies accountable for providing coverage for PANS/PANDAS treatments.

Our children deserve to receive the treatments that can help them regain their lives, and the financial burden should not fall solely on families.

We are advocating for a future where no family has to choose between their child’s health and their financial security.

We won’t stop until every child with PANS/PANDAS in New York gets the care they deserve.

Join Us