Empower. Support. Donate.
With your help, ASPIRE will continue to educate the medical, legislative, 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 and a decrease in suffering. Unfortunately, many PANS & PANDAS patients do not receive a timely diagnosis or appropriate treatment due to a lack of education about these medical conditions. When access to care is delayed, symptoms can worsen and become chronic. Please help the lives of those affected by PANS & PANDAS by helping to shorten the time between the onset of symptoms and the start of treatment.
You can impact our community in a lasting way. You are an integral part of creating progress for our community.
ASPIRE in Action – We empower and connect our community with tools and resources for advocacy, education, support, and awareness.
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ASPIRE’s 5 Core Audiences
Your support funds ASPIRE’s programs that reach five core audiences to increase awareness and understanding of PANS PANDAS on a national level while providing critical support to all community members. Would you please help ensure ASPIRE can educate the medical, legislative, school, and family communities about PANS/PANDAS?
- National General Public
- Families & Patients
- Schools & Educators
- Providers & Researchers
13,000+ Followers on Social Media
4,500+ Newsletter Subscribers
Our social media following is growing every day. Social media is one of the places many first hear about PANS PANDAS. So, keep sharing our posts every week, not just on Awareness Day! Please help us expand our 250,000+ reach on social media! Facebook, Instagram, Twitter, LinkedIn, and YouTube.
We sent 45+ newsletters this year to 4,500+ subscribers. If you don’t subscribe to our newsletter, do so today! You don’t want to miss any updates about upcoming events and news.
900+ Support Emails Answered
2000+ ASPIRE Facebook Group Members
We answered emails from 900+ parents/caregivers, adult patients, providers, educators, and legislators. We thought answering 500 emails last year was a lot! We strive to keep offering one-on-one support to our community.
Since starting the ASPIRE Facebook Group, our community has grown by 2000+ members. Come join us for hive-minded support and information. Our Facebook Group is only open to parents/caregivers and adult patients.
6500+ Views of 13 ASPIRE Webinars
6 New Education Toolkits/Handouts Written
25+ New Articles & 125+ New Website Posts
One of our primary goals is to distill information about PANS PANDAS into understandable components and create useable resources to empower our community.
We launched our webinar program this March to a resounding success. To reach our core audiences, we divided our topics into five categories. 1- Treatment & Scientific Updates. 2- Behavioral Health. 3- Integrative Medicine. 4- School Support. 5- Family & Patient Support. We hosted 13 nationally recognized speakers. If you missed any of our webinars or just want to watch them again, you can watch them all at your convenience, as they are all available on demand. See our webinar section. We will post our 2023 schedule soon.
Since we opened our doors, we have created 50 materials to share, download or print, including 11 toolkits, 5 worksheets, 15 handouts, and 19 posters. This year we did not slow down in creating new educational materials for you. This year we wrote 5 new education materials, including new toolkits and handouts.
In addition, we created an 8-minute explainer video About PANS PANDAS. This is a perfect way to introduce someone to PANS, and we use it in all of our conference exhibition booths.
Our newest Toolkit focuses on Testing for and Treating GAS (Strep) in PANS PANDAS and was written in collaboration with Dr. Susan Swedo & Dr. Mark Pasternack from our Professional Advisory Board. Parents and educators across the world download our new Comprehensive Educator Toolkit. Our About PANS PANDAS video was viewed almost 5,000 times! Check out all of our handout materials.
ASPIRE is well known for its content-rich website, and we are not slowing down on writing new articles for our community. Some of our new pages focus on PANS Symptom Course, Symptom vs. Disorder, Pill Swallowing Techniques with a worksheet, more Personal Stories, and General Special Education Articles.
We also continually update the site to create a comprehensive library of new research, news articles, books, podcasts, lectures, etc.
53 In-Service School
2000+ Education Materials Downloaded
11 Events with Outside Organizations
Every day, we are busy working on reaching beyond our immediate community to increase awareness and education on PANS PANDAS.
School In-Service Lectures & Consultation
We provided 54 In-Service Lectures to schools in 2022. That is more than one a week! We have two lectures: one for school nurses and another for general staff, teachers, administrators, therapists, counselors, etc. Audiences ranged from 5 to 200 attendees per lecture via Zoom all over the country. We spoke at our first college this year too! Several schools returned this year for additional training for new staff and to better support their new students with PANS PANDAS. Our In-Service program is one of our proudest accomplishments, as the feedback from educators, school nurses, and families was phenomenal. Learn more about ASPIRE’s In-Service Program funded by our donors.
ASPIRE has created over 50 Toolkits, Handouts, Worksheets, and Posters. This year, people have downloaded these educational materials over 2000+ times. We don’t even track the number of downloads for all our materials! In addition to those 2000+ downloads, many organizations print hundreds of our toolkits to give out at conferences and meetings. Some of our most popular brochures & toolkits are:
- Consider PANS PANDAS Flyer
- Provider Information Toolkit
- Comprehensive Education Toolkit
- PANS Guidelines for Children with Autism Toolkit
- PANS & Eating Disorders Toolkit
Events with Other Organizations
We are fortunate to have helped organize two Grand Rounds at hospitals in New York and Iowa with Dr. Susan Swedo and Dr. Shannon Delaney from our Professional Advisory Board.
We had many opportunities to expand our outreach efforts by
- Exhibiting and sponsoring three conferences
- Autoimmune Encephalopathy Secondary to Infectious Disease
- Northeastern University School Health Academy – NEUSHA
- International OCD Foundation – IOCDF
- Lecturing at TACA Learning Seminars on PANS & Autism
- Being a featured guest on 4 podcasts that focus on Mold, Autism, Caregiving kids with Mental and Health Challenges, and more
- Panel Member of The Office of Disability Prevention for Children in Texas conference
4 Legislative Testimony Letters Written
10 State Pages Created
1 Advisory Council Supported
ASPIRE’s Board cannot be in every state across the country, so we support the efforts of legislative efforts of state leads in various capacities. We create State Pages on our website to serve as their home base, so they do not have to set up their own websites. We create State Surveys for states seeking information about their PANS community to use in their discussions with legislators. Our Executive Board and Professional Advisory Board write letters of testimony to support active Bills. Lisa Hardy, ASPIRE’S Advisor to the Board, sits on the Texas PANS Advisory Board and has been an integral member. This year she sat on a panel with council members at The Office of Disability Prevention for Children conference. They presented a webinar for Texas Health & Human Services and published a council report.
Achieving the ASPIRE Mission
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.
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.
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.