ASPIRE Blog

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 The strawberry-blond boy who played on the chess team and looked forward to Mandarin lessons became withdrawn, obsessive, and suicidal.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.

The Inflammatory Brain Disorders Conference features nationally and internationally renowned experts skilled in diagnostic and therapeutic approaches who will present a diverse range of emerging clinical and research challenges, insights, and advances in the field of inflammatory brain disorders. The conference will be held live virtually. All registrants will receive a recording of the entire conference.

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!

The conference is for parents and professionals and is completely online so available world-wide.  It will be recorded and available for viewing for ticket holders for a period of time after the conference.

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.

Children brought to behavioral health clinics with a sudden onset of changes in behavior and/or mood are often misdiagnosed and mistreated because clinicians don’t know the signs and symptoms of pediatric acute-onset neuropsychiatric disorders (PANS) or the related condition,

WE HAVE A CALL TO ACTION for House Bill #488 that requires insurance coverage for PANDAS/PANS kids in OHIO!

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