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.
With your help, ASPIRE will continue to educate the medical, school, and family communities about PANS/PANDAS while advocating for affordable, proven treatments.
2019 Year in Review Video
For full screen, click the symbol on the lower right hand of the video.
Every gift helps us continue our work to support all those affected by PANS, PANDAS and immune-related encephalopathies.
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.
A Year in Review
We want to thank you for welcoming ASPIRE with open arms to work with you 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.
Who We Are
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 capacity for 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
We Aspire to Transform
Professional Advisory Board
The ASPIRE Professional Advisory Board (PAB) is a multidisciplinary group from many of the country’s top medical institutions all, with extensive knowledge of PANS and PANDAS. The PAB and ASPIRE have begun a few projects that will positively impact the community. They provide ASPIRE with credible, evidence-based information as well as advanced knowledge of research. We look forward to sharing those projects and many more with you in 2020.
We Aspire to Educate
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! There are also plenty of handouts and information packets to download. We look forward to expanding our resource section with additional resources. Our Social Media outlets (Facebook, Instagram, Twitter, LinkedIn) provide up to date news, so make sure you follow us and don’t miss out on events and news.
We Aspire to Inform
Provider and Allied Health Awareness & Education
Thanks to continued donor support, ASPIRE has exhibited and lectured at seven national and local conferences this year. Exhibiting at conferences is a crucial part of educating professionals about PANS/PANDAS. We can spend positive one-on-one time with individuals answering their questions, discussing future projects, and establishing new relationships. We will continue this key endeavor in 2020 at additional conferences. Additionally, we will organize Grand Rounds and Lunch & Learns. Please help ASPIRE keep these crucial projects by donating today. Your dollars will directly fund printing, conference fees, and travel fees.
- Became a National Partner of The National Institute of Mental Health (NIMH)
- Exhibited at IOCDF, AAP, Illinois Summit, Medstar/Georgetown, Portsmouth Symposium
- Lectured & Exhibited at Central Mass Lyme Conference and Staten Island Health Fair Expo
We Aspire to Support
Parent Support & School Advocacy
Since the day we launched ASPIRE, we have been supporting families by answering one-on-one emails from patients and caregivers. Need more help, email us! In 2020, 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.
Our website has lots of useful information for school educators as well as parents. Information about PANS at School starts in the Treating PANS section of the website and continues with articles in the resources section under Schools & Educators. In addition to creating new website articles and downloadable materials on PANS/PANDAS at School, we will expand our team to include more trained individuals who can provide school-based providers with education on PANS/PANDAS in the school setting.
We are proud of our Plasma Drive initiative. Seeing the need for more plasma donations due to a nationwide IVIG shortage, we created materials to make it easy for individuals to host their own plasma drive in their area. In October, we supported eleven individual drives. We will continue to help people host their own drives throughout the year as the need for plasma is still critical.
We Aspire to Advocate
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. Would you like to learn how best to talk to your local legislators? Our section on Advocate for Change will get you started. Contact us directly about initiatives in your state.
We Need Your Support! We look forward to partnering with you to continue our mission of improving the lives of those affected by PANS/PANDAS!
Our goal is to raise $50,000 by December 31st. If we raise that amount, we will be able to provide more information packets and handouts at more outreach events and conferences throughout 2020. We need your help to make it happen. Would you be willing to make a special year-end donation of $50, $100, $500 or whatever you can afford to help us meet our goal and improve the lives of PANS/PANDAS patients? With your support, we can impact our community in a lasting way. You are an integral part of the progress our community needs. Please join us by making your gift via our online donation form. The lives of hundreds of PANS/PANDAS patients are at stake.
Be a hero. Empower. Support. Donate Today.
Thank you for your support,
ASPIRE has a Fiscal Sponsor Agreement with Southeastern PANS/PANDAS Association (SEPPA) while the IRS processes our application for 501c3 status. SEPPA is a tax-exempt nonprofit organization under Section 501(c)(3) of the Internal Revenue Code, Employer Identification Number (EIN) 81-1366271. Your contribution is tax-deductible to the extent permitted by law. Please note that your donation will appear on your credit card/bank statement as a donation to SEPPA.
I donate to ASPIRE in the name of my two grandsons. Their website and handouts have helped our family understand PANS better and, as a result, be better advocates. We are so thankful that they exhibit and speak at conferences across the country, as every audience needs education. It is a relief to have a national organization that makes us feel that we are not alone on this challenging journey. We will continue to support ASPIRE.Katie E.