ASPIRE Blog

My oldest child was diagnosed with PANDAS at 6 and a half years old after sudden onset. At the height of her symptoms, my youngest was turning 2. I noticed immediate changes in the younger child, who was still learning about the world around her and mimicking behaviors. She went from previously being a very […]

Are you in New York State? Help secure legislation mandating insurance coverage for PANS PANDAS in New York. No experience necessary.

“The University of Arkansas for Medical Sciences-Arkansas Children’s Hospital (UAMS-ACH) Childhood Post-Infectious Autoimmune Encephalopathy (CPAE) clinic specializes in diagnosis and treatment of PANS/PANDAS. The CPAE clinic is led by Dr. Veronica Raney, M.D., a pediatric psychiatrist, and Dr. Aravindhan Veerapandiyan, M.D., a pediatric neurologist. The UAMS-ACH CPAE clinic is a part of the PACE Foundation […]

ASPIRE Board Members hosts Comitato Italiano Genitori in a discussion on PANS PANDAS Webinar: Wednesday, April 28th – 10:00am – 12:00pm EST Featuring ASPIRE Board Members: Susan Swedo, MD and Gabriella True They will clarify the most frequent questions that Italian parents from Comitato Italiano Genitori ask about diagnosis and treatment.

Rare Across America Congressional Meetings Make an impact on federal policy from close to your home. Share your rare disease story. Meet other rare disease advocates. ASPIRE joined several Congressional meetings organized by Rare Disease Legislative Advocates (RDLA) on March 3rd and 4th, 2021 to talk about PANS PANDAS as well as issues that affect […]

Amongst the speakers will be ASPIRE’s Professional Advisory Board member, Nancy O’Hara, MD, MPH, FAAP, and her practice partner Lindsey Wells, ND.

I am proud of my journey. It made me the person I am today. I still have a while until recovery, but my progress is enough to motivate me to keep pushing.

Timothy was 10 years old when his personality changed overnight. A concussion during a family ski trip in December 2016 left him unsteady on his feet, but that was just the first sign something was wrong. The strawberry-blond boy who played on the chess team and looked forward to Mandarin lessons became withdrawn, obsessive, and suicidal. Back home in Marin County, California, he said “bad men” had surrounded his family’s house and were trying to get him.

I’m sending out gift bags to other kids because I want to help make their experience during IVIg day a little better. If you know of someone getting IVIg, please contact me so that I can send them a little PANDAS love in a package!

I think the biggest thing you can do for your PANDAS kid is never to give up on them!! Find what works for them and always advocate for their health and education. When someone tells you they cant accommodate your child, make them listen or find someone else who will!! Evan has come such a long way and is a happy, funny 10-year-old. We still have occasional flares, and he still needs support emotionally at times, but he knows we are there to help him!

Read about one family’s journey of how they handled their daughter’s inability to attend in-person school full time and ultimately weaving together a partial in-school and homebound instruction program.

Share your PANS PANDAS story about how siblings are affected too!