ASPIRE Board
Wendy Nawara, MSW
President
President
Wendy Nawara, MSW, is ASPIRE’s President. A lifelong desire to help families and children led Wendy to earn a Bachelor of Science in elementary education with concentrations in both early childhood and special education at Butler University, and a Master of Social Work degree at Jane Addams College of Social Work at the University of Illinois. Wendy is a member of the National Association of Social Work (NASW) and the Council of Parent Attorneys and Advocates (COPAA).
Wendy established PANDAS/PANS Advocacy and Support (PAS) in 2013. Serving as President of the Board and Executive Director of the non-profit, she worked to institute the community’s first grant-giving program. Additionally, Wendy and a team of parents and legislators in Illinois were the first to pass legislation requiring insurance coverage for treatments of PANS/PANDAS. She sits on the Illinois PANS/PANDAS Advisory Council and collaborates freely with other state teams to accomplish similar goals. Drawing on over twenty years of experience in counseling, education, advocacy, and policy change, Wendy’s primary focus is the maximization of PANS and related encephalopathies communities through collaboration, increasing knowledge, and the development of positive supports.
Gabriella True
Vice-President
Vice-President
Gabriella True is the Vice President of ASPIRE, Alliance to Solve PANS & Immune-Related Encephalopathies. She has been a leader in the PANS and autism communities since 2008. She continues to be an instrumental part of the Connecticut PANS PANDAS Partnership (CTPPP), a Connecticut based support and awareness group. As part of New England PANS/PANDAS Association (NEPANS), Gabriella held many roles, including that of President, 2015-2018. While at NEPANS, her focus was on creating tools to spread awareness and understanding throughout the community, supporting parents, educating schools and school nurses, and hosting two conferences. She sat on the PANDAS/PANS Advisory Council to the Department of Health for Connecticut. In addition to her work in the PANS community, Gabriella is also The Autism Community in Action (TACA) Connecticut Chapter Coordinator and has volunteered for them for ten years. Gabriella is a parent to two children with PANS, one who also has autism. Gabriella has a Bachelor of Art in Art History and has worked as a merchandise planner at The Metropolitan Museum of Art and Saks Fifth Avenue. She is excited to be a part of ASPIRE, focusing on collaborating with other leaders in the PANS Community.
Kelly Wooldridge, MPT
Treasurer
Treasurer
Kelly Wooldridge is the Treasurer of ASPIRE. Kelly has devoted most of her professional and volunteer life to helping children and their families. She has been a pediatric physical therapist for over 20 years, spending the last 7 in hospital pediatric rehab leadership. Kelly is the mother to three amazing teenagers, two of whom have PANDAS. She is co-President and a founding member of Midwest PANDAS/PANS Parent Association (MPPA) a 501c3 with a mission of promoting awareness and access to care for children with the diagnosis. Kelly and founding board members of MPPPA hosted a PANS/PANDAS medical conference in 2015 with CMEs provided by Washington University to providers from across the country. Throughout her professional career working with children and families, case managing for her own children, and advocating on behalf of many families faced with the challenges of PANS and related encephalopathies, it has become clear to Kelly that the key to meaningful and sustainable change is collaboration and the right relationships. She quickly recognized that both of these qualities were strong within the founding team of ASPIRE. Kelly looks forward to serving in her role as Treasurer, bringing her career skills of financial stewardship to assist in advancing the mission of ASPIRE.
Jessica Gowen
Secretary
Secretary
Jessica Gowen, MPM, is ASPIRE’s Secretary. She is a founding member and President of the Board of the Southeastern PANS/PANDAS Association (SEPPA). In her role at SEPPA, Jessica has spearheaded provider education efforts and advocated for the needs of PANS/PANDAS patients and families with policymakers in Georgia. An Atlanta native, Jessica is an entrepreneur and owner of a wellness studio. She holds a Master in Public Management degree from the University of Maryland and is a mother of three children with PANDAS/AE. She brings her varied professional experience in public policy, wellness, entrepreneurship, strategy development, and management to her role at ASPIRE.
Lisa Hardy, RN
Advisor to the Board
Advisor to the Board
Lisa Hardy, RN joins ASPIRE as Advisor to the Board. She is President and Executive Director of Children’s Autoimmune Brain Disorder Association (CABDA) of Texas, a regional 501c3 launched in 2017. Lisa is a Registered Nurse with over ten years’ experience in surgical and open-heart intensive care at Level 1 Trauma Centers in Washington, DC, and Atlanta, GA. Her experience as a critical care RN has been an asset in advocating for those affected with PANS. In striving to improve access to treatment and to increase awareness, Lisa has facilitated community meetings with the expansion of the Autoimmune Encephalitis Clinic to include PANS treatment at the University of Texas Southwestern. She also initiated meetings with stakeholders and public policymakers, leading to the development of legislation to form a PANS Advisory Council in the state of Texas. Additionally, Lisa’s long history of volunteer work and employment in the Children’s Ministry complements her passion for helping children with neuropsychiatric challenges receive support in all areas of their life.
Susan Swedo, MD
Provider Outreach Chair, Professional Advisory Board
Provider Outreach Chair, Professional Advisory Board
Susan Swedo, MD, is ASPIRE’s Provider Outreach chair, ex-officio Board Member. She is the Chief Science Officer for PANDAS Physicians Network. Dr. Swedo recently retired as the Chief of the Section on Behavioral Pediatrics at the National Institute of Mental Health (NIMH). She remains designated as a Scientist Emeritus at the National Institute of Health. Dr. Swedo is a board-certified pediatrician; she received her M.D. from Southern Illinois University School of Medicine and completed her pediatrics residency at Northwestern University’s Children’s Memorial Hospital in Chicago, Illinois. Dr. Swedo began her career as a hospital-based pediatrician in Evanston, IL and was later named Chief of Adolescent Medicine at the McGaw Medical Center of Northwestern University. In 1986, she joined the staff of the Child Psychiatry Branch at the National Institute of Mental Health. Dr. Swedo and her NIMH team were the first to describe a post-infectious etiology for OCD and define criteria identifying the PANDAS subgroup. In 2002, Dr. Swedo moved to the extramural side of NIMH to serve as Associate Director for Pediatric Research and Director of the Division of Pediatric Translational Research. She returned to the Pediatrics & Developmental Neuroscience Branch in May 2006 to establish a multi-disciplinary, clinical research team focused on the diagnosis and treatment of childhood neuropsychiatric conditions, including Sydenham’s chorea, Tourette Syndrome, Obsessive-Compulsive Disorder (OCD), and autism spectrum disorders. Dr. Swedo has authored/co-authored over 100 research publications.
Gregory Panagos
Finance Committee Chair
Finance Committee Chair
Gregory Panagos joined ASPIRE to oversee the organization’s financial and accounting procedures as the Finance Committee Chair. He has had a successful career as a portfolio manager on Wall Street, along with decades of experience working for The Greek Orthodox Church of America. Greg has also held Board and Trustee positions at the parish, Diocese, and Archdiocese levels. In 2018, Greg was Director of Operations of The Archdiocesan Cathedral at The Holy Trinity, located in New York City. He brings many valuable qualities to ASPIRE, such as his extensive 501c3 experience, management skills, and knowledge of important practices in a nonprofit entity. He is the proud parent of a PANDAS child, who now attends college in New Jersey.
Lucy Fry
Communications Chair
Communications Chair
Lucy Fry is ASPIRE’s Communications Chair. Professionally, Lucy is the co-founder and creative director at Biscuit Studios in Atlanta, GA, and Chief Technology Officer & Director of Marketing at OnDoc, LLC. She is the communications chair for the Southeastern PANS/PANDAS Association (SEPPA). She is also on the board for Atlanta Girls’ School. In her role with ASPIRE, Lucy is creating a new robust website that is rich in content for parents, caregivers, providers, schools, and patients. Her ultimate goal is to establish a single online source which provides credible science-based information, research, and resources that are easy to find and share.
Born and raised in Miami, Florida, Lucy grew up surrounded by color, culture, loud music, crazy foods, and the kind of heat that terrifies most. But she loved every second of it. It created a fire inside that seamlessly translates into her work, her relationships with clients, and her belief that great things come from happy people. She is a graduate of the University of Florida School of Architecture, and has built her business on the premise that “do what you love and the rest will come…”
Christine Kapetanakis
Public Relations Chair
Public Relations Chair
Christine Kapetanakis is the Public Relations Chairwoman for ASPIRE. She was the first to initiate a PANDAS Awareness Day on October 9th after taking the recommendation from NY State Assemblywoman, Nicole Malliotakis. Since then, many states have followed suit. Christine runs a local awareness group on Staten Island to educate local medical and mental health professionals. She used her talents as an Emmy and Grammy-winning video editor and producer for over twenty years to assist in producing and editing the Emmy winning documentary, “My Kid is Not Crazy.” Christine successfully lobbied in Washington DC to direct funds from the 21st Century Cures Act towards PANS research. She organized educational conferences at Staten Island University Hospital and assisted with many other events, including the 2018 Columbia University Conference and 2018 Illinois PANS/PANDAS Advisory Council Summit Meetings. She will continue networking and organizing events for ASPIRE. Christine’s son was a highly functioning typical kid who was diagnosed with PANDAS at age 12. Due to his PANDAS, he was determined developmentally disabled at age 16 and now at 22 years old, presents with autoimmune encephalopathy.
We aspire to discover.
Learn about other families whose lives have been affected by PANS/PANDAS — and be inspired to share your own.
The Happiest Place on Earth
They say that when your child has PANS/PANDAS that you often remember the exact moment something changed. For our oldest son, Neely, that “moment of change” happened in front of Dumbo in Fantasyland, he was six (first grade). As I stood there with our two-year-old in the stroller and crying and pregnant with our third […]