With your support, we can impact our community in a lasting way. You are an integral part of the progress our community needs. The lives of hundreds of patients of PANS/PANDAS are at stake. Every gift helps us continue our work to empower all affected by PANS, PANDAS and immune-related encephalopathies. Be a hero. Empower. Support. Donate.
Despite the challenges of 2020, we are proud to report that the ASPIRE community continues to grow in size, support, and strength. We are grateful to all of you for your contributions: the clinicians, researchers, educators, parents, families, volunteers, and friends for your tireless commitment to those impacted by PANS/PANDAS.
If 2020 has taught ASPIRE anything, it is that we can pivot to build advocacy, education, and awareness no matter the barriers before us. Over the past year, the ASPIRE community has doubled in size. The requests for support and information tripled – and our volunteer Advisory Boards and committee members answered all. We developed educational resources for parents, educators, and clinicians – all are free to download and share. We rebuilt our communications infrastructure and expanded our social and email platforms to connect the community and share essential information and updates. We continue to help with legislation to ensure that all have affordable access to the care they need to recover.
As we look forward to the new year, our efforts and your assistance are as essential as ever – an estimated 1 in 200 children in the US struggle with PANS/PANDAS. By supporting ASPIRE, you are aiding those in need by building awareness, advocacy, and access to care. Recovery is possible, and together we can help make it happen.
Thank you for being part of the ASPIRE family.
About PANS PANDAS Video
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With your help, every gift helps us continue our work to support all those affected by PANS, PANDAS and immune-related encephalopathies.
Be a hero.
Empower. Support. Donate.
With your help, ASPIRE will continue to educate the medical, school, and family communities about PANS/PANDAS while advocating for affordable, proven treatments.
PANS is a devastating disorder but recovery is possible. Early diagnosis and treatment lead to improved outcomes. Unfortunately, many PANS/PANDAS patients do not receive a timely diagnosis or appropriate treatment due to a lack of education about this medical condition. When access to care is delayed, symptoms can worsen and become chronic. ASPIRE aims to improve the lives of those affected by PANS by closing the gap between the onset of symptoms and the start of treatment.
With your support, we can impact our community in a lasting way. You are an integral part of the progress our community needs.
2020 – A Year in Review
We want to thank you for working with ASPIRE to improve the lives of those affected by PANS/PANDAS. Through collaboration, hard work, and a lot of heart, we have had a busy and constructive year.
We Aspire to Improve
We launched a new national organization called ASPIRE, Alliance To Solve PANS and Immune Related Encephalopathies in July 2019. We are experienced local, regional, and national nonprofit leaders building on lessons learned in our organizations. Our professional experiences in allied health professions, project management, and entrepreneurship guide our work.
What We Do
We Aspire to Empower
We are actively working to bring together the patient, parent, provider, and research communities acting as a conduit to connect the stakeholders who affect outcomes of those affected by PANS/PANDAS.
ASPIRE is focused on providing practical tools to increase local, state, regional, and national advocacy efforts to accelerate improvements in access to diagnosis, treatment, and quality of life for affected individuals and families.
We are collaborating with experts in their field to create national programs that will empower and connect our community with tools and resources for advocacy, education, support, and awareness.
Achieving the ASPIRE Mission
Professional Advisory Board
The ASPIRE Professional Advisory Board (PAB) is a multidisciplinary group from many of the country’s top medical institutions, with extensive knowledge of PANS and PANDAS. Along with a very talented team of leading PANS/PANDAS clinicians and researchers, we are very fortunate to have Dr. Swedo serve as Chair of ASPIRE’s Professional Advisory Board(PAB). They provide ASPIRE with credible, evidence-based information as well as an advanced understanding of research.
This year, the PAB and ASPIRE will continue to work on several projects that the community will use to understand PANS/PANDAS better. More tools you can use!
Website & Social Media
The ASPIRE website is highly informative and content-rich. It includes information on PANS from symptoms to diagnosing to treatment plus parent support tools, school support, legislative advocacy efforts, awareness day projects, etc. We continuously update it with new content, so keep visiting us for more information!
We brought you many interviews with top doctors across the country on PANS/PANDAS, tick-borne infections, new research, and more.
- Tick-Borne Infections and PANS
- Susan Swedo, MD discusses Autoantibody Biomarkers for Basal Ganglia Encephalitis
- The latest research from Christopher Pittenger, MD at Yale on Antibodies that bind to CINs in children with PANDAS
When the country’s focus turned to COVID-19, we pivoted and focused our educational and legislative efforts on how this new virus affects PANS/PANDAS by creating an Information Series on COVID-19. We worked with other organizations on legislative matters, including pushing for increased access to telehealth and brought you information on COVID-19 from the New England Center for Health.
School, Family, Provider, Allied Health Awareness & Education
ASPIRE has made it easy to educate anyone on PANS PANDAS. We have created several new informational packets, single-page fliers, and posters about PANS PANDAS for you to download for free or to share directly via the download page.
Some of ASPIRE’s Flyers, Packets, and Posters
- PANS PANDAS Overview Packet
- PANS PANDAS Provider Information Packet
- Information for School Nurses Packet
ASPIRE has expanded its Resources for Clinicians
- NATCON Behavioral Health E-Poster Presentation
- Role of Nurses in PANS PANDAS
- PANS/PANDAS and Occupational Therapy
- Common Themes from the Caregiver Experience with Information
ASPIRE created an electronic poster for the National Council for Behavioral Health (NATCON) conference. The e-poster is really a mini-website with a comprehensive overview of PANS/PANDAS including important information on Behavioral Health. The ASPIRE e-poster for NATCON is available to the public to view. The National Council for Behavioral Health is the unifying voice of America’s mental health and addictions service and treatment organizations. The NATCON conference is the largest behavioral health conference in health care.
Parent Support & School Advocacy
Since the day we launched ASPIRE, we have supported families by answering one-on-one emails from patients and caregivers. We have had a busy year answering more than triple the number of support calls and emails as the year before.
Need more help, email us! In 2021, we will continue to expand our team of parent advocates further to provide more one-on-one support nationwide. We are currently creating more tools for caregivers and patients that will help them advocate effectively for their children or themselves. Check out how to Prepare for Your First Appointment. With donations, we can print and distribute more Family Support and School Advocacy Information Packets.
ASPIRE has expanded our PANS PANDAs Family and Patient stories section. Our stories are powerful. They inform, educate, and reassure. Learning what PANS is really like from families and patients provides an invaluable window into the reality of living with a PANS diagnosis. Every story is unique in its own way but all have a universal connection that ties our experiences together. We are not alone in this diagnosis. We can support and learn from each other. Please read through the stories. We highly encourage you to submit your Personal Story today!
Public Policy & Legislative Initiatives
ASPIRE continues to guide public policy issues that touch our community. We look forward to announcing these initiatives once they are finalized. We will continue to work with local PANS/PANDAS community advocates on legislative efforts to expand insurance coverage of standard of care treatments. ASPIRE provides testimony letters from both the Board and the Professional Advisory Board to states who have active bills. We also have a legislative packet that we are continually updating for use by local advocates.
ASPIRE is proud to have been asked to partner with IOCDF in their Virtual Voices for Mental Health legislative Hill day, an online email campaign in support of important mental health legislation in the US Congress. In this Rally & Training, viewers heard from mental health advocates, learn strategies for effectively telling their own personal stories, and get information about priority mental health legislation. The International OCD Foundation organized the event in partnership with the TLC Foundation for BFRBs, Picking Me Foundation, and the Alliance to Solve PANS & Immune-Related Encephalopathies (ASPIRE).
Your Year-End donation will help to close the gap between the onset of symptoms and the start of appropriate treatment. We simply can’t do it without you. Your support will make a real, lasting impact on the lives of those who are still in need.