Advocacy for PANS PANDAS:
Beyond the Therapy Room

Advocacy for pediatric OCD and PANS/PANDAS has become one of the most meaningful parts of my work. While I spend my days supporting children and families in the therapy room, I also believe that meaningful change needs to happen beyond it.

For too many families affected by PANS/PANDAS, the challenges don’t end when they a therapy appointment. Families often find themselves navigating gaps in awareness, access to appropriate care, insurance coverage, education, and support.

That is why advocacy has become such an important part of my work.

From raising awareness in my local community to supporting statewide legislative efforts and collaborating with professionals around the world, I am committed to helping create a future where children and families affected by PANS/PANDAS are better understood and supported.

CARE Loudly

One way I bring advocacy into the community is through CARE Loudly—an Etsy shop featuring advocacy apparel and merchandise designed to help families, clinicians, and supporters wear their advocacy for PANS/PANDAS.

Many designs can be personalized with your city, making it easy to spark conversations, raise awareness, and bring advocacy into communities across the country.

Even more importantly, 100% of profits are donated each year to a nonprofit organization serving the PANS/PANDAS community.

This year’s beneficiary is ASPIRE, an organization dedicated to supporting families, advancing education, and improving access to care for children affected by PANS/PANDAS.

Whether you purchase a sweatshirt, water bottle, hat, or mug, you’re helping spread awareness while directly supporting organizations working to make life better for affected children and families.

Get ready for World PANS/PANDAS
Awareness Day in Syracuse, NY!

Syracuse is proud to participate in World PANS/PANDAS Awareness Day for the second year in a row! This event is being sponsored by Wegmans.

In collaboration with ASPIRE, we’ve once again partnered with National Grid to have the iconic National Grid Building illuminated green in recognition of children and families affected by PANS/PANDAS. To learn more about ASPIRE’s participation in the international campaign #lightup4PANS, visit their website here.

This event is about so much more than lighting a building. It’s about increasing awareness of a misunderstood condition, reducing stigma, connecting families who often feel isolated, and reminding every child and parent navigating this journey that they are not alone.

This year’s event is especially meaningful because it comes on the heels of an exciting milestone in our legislative advocacy efforts. Thanks to the incredible work of families and advocates across New York, a legislative resolution was passed in Albany officially recognizing World PANS/PANDAS Awareness Day at the New York State Capitol for the first time in state history. 

While there is still much work to be done, moments like these remind us that progress is happening, awareness is growing, and these children are finally beginning to be seen. We hope you’ll join us on October 9 as Syracuse joins more than 220 landmarks around the world in shining green for PANS/PANDAS awareness.

Legislative Initiatives in NYS

Two companion bills are currently before the New York State Legislature that would require state-regulated health insurance plans to cover medically necessary treatment for PANS, including PANDAS.

Senate Bill S10208 — sponsored by Senator Pete Harckham with Senator Daniel G. Stec and Senator April Baskin

Assembly Bill A9659-A — sponsored by Asm. Michael S. Cashman, with nine co-sponsors

Together, the bills would amend New York Insurance Law to require coverage of evidence-based PANS/PANDAS treatment when ordered by a treating physician. New York would join 17 other states that already require this coverage.

This effort has been brought before the New York State Legislature, in various forms, for nearly ten years. The Assembly bill has gained new momentum under Assemblymember Cashman’s sponsorship, adding several new co-sponsors over the past year.

Both bills are currently in committee — S10208 in the Senate Insurance Committee, A9659-A in the Assembly Insurance Committee.

We need families and youth survivors to put a human face on this legislation. Personal letters and testimony carry real weight with lawmakers. Please consider sharing yours.

Partnership with the Office of the Chief Disability Officer

Partnering with New York’s Office of the Chief Disability Officer

Alongside our legislative work, we recently established an ongoing partnership with New York State’s Office of the Chief Disability Officer, working together toward three goals:

1. Improving educational resources on PANS/PANDAS for families, schools, and providers across the state

2. Updating New York’s .gov websites so accurate, up-to-date PANS/PANDAS information is easy for families and clinicians to find

3. Closing the gap between symptom onset, diagnosis, and access to care in New York State — so children are identified and treated faster, before delays cause lasting harm