NEPANS - Mission & History

NEPANS Mission

NEPANS PANS PANDAS Mission Board About Us

The New England PANS/PANDAS Association is a group of parent and medical volunteers from various states across New England focused on raising awareness of Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS), and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). We strive to support the medical community and caregivers in their efforts to heal and take care of children with PANS/PANDAS.

Our Mission is Simple:

To raise awareness of PANS/PANDAS in our community and beyond.
To support the medical community in their mission to heal our children suffering from PANS/PANDAS.
To look for ways to expand the medical care available.
To create opportunities to assist families searching for solutions.

How We Accomplish Our Mission

NEPANS is a 501c3 non-profit organization (FEIN 46-3009368) founded by parents of children with PANDAS/PANS. Since 2013, we have raised awareness of PANS/PANDAS and its symptoms, treatments and ways for parents to access assistance by providing:

Conferences, workshops and educational meetings to parents, doctors, schools, community mental health groups, etc.
Referrals for parents to physicians, advocates, therapists, and support groups
School nurse education seminars
Updates on the latest news and information via Newsletters, Facebook, Twitter & Pinterest
Awareness materials for educational outreach purposes
Materials to assist both parents and school personnel in creating appropriate accommodations in the school setting

Our History

NEPANS was founded due to the need for PANS/PANDAS education, awareness and support. In 2013, a group of parents and practitioners came together to organize a large-scale conference in Rhode Island that encompassed educational and scientific awareness featuring multiple medical specialists and a parent advocate for the purposes of sharing current research, treatment methods, and surveys of participant families. Over 300 people attended this two-day conference.

Since this first conference, NEPANS fulfills its mission by continuing to organize conferences and seminars provided by specialists who discuss their treatment protocols, latest research findings, and case studies. NEPANS has further expanded PANS awareness by creating awareness campaigns and educational outreach materials. NEPANS has been at the forefront of providing education on PANS to the School Nurse community throughout New England. NEPANS also provides support to families on an individual basis and by helping to promote local support groups.

Founding Members: Peggy Chapman, Megan Greenstein, Lisa Grisolia, Lisa Hart, Tiffani Nelson, Kim Panton, Jennifer Vitelli, Cathy Witkos

NEPANS remains a small grassroots organization. There are no paid positions. We operate under a small budget and work hard to keep operating costs low so as to focus our efforts on awareness, education and support. We reach roughly 3,000 people a month via our newsletter, Facebook page, website and in person. As awareness expands, the need for education and support is increased and we strive to meet those needs.

NEPANS Board Members: Margaret Chapman, Michele Danubio, Melissa Glynn-Hyman, Lisa Grisolia, Emily Klein, Tiffani Nelson, Robin McCune, Beata Takahashi, Gabriella True, Jennifer Whelan

Image Credit: Selected by Freepik