Sibling Story – Relationship improves as symptoms improve

Sibling Story – Relationship improves as symptoms improve

Published: Apr 1, 2021   |   Author: Gabriella True   |   Category: Blog, Personal Stories   |   No Comments

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 […]

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Childhood Post-Infectious Autoimmune Encephalopathy Clinic at U Arkansas

Childhood Post-Infectious Autoimmune Encephalopathy Clinic at U Arkansas

Published: Apr 1, 2021   |   Author: Gabriella True   |   Category: Blog, News   |   No Comments

“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 […]

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Comitato Italiano Genitori Webinar on PANS PANDAS

Comitato Italiano Genitori Webinar on PANS PANDAS

Published: Mar 30, 2021   |   Author: Gabriella True   |   Category: Blog, Featured on Homepage   |   2 Comments

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.

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ASPIRE Participates in Rare Across America

ASPIRE Participates in Rare Across America

Published: Mar 27, 2021   |   Author: Gabriella True   |   Category: Blog, Events, Fundraisers, Special Projects, Featured on Homepage, Legislative Resources   |   Tags:   |   No Comments

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 […]

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A Boy, His Brain, and a Decades-Long Medical Controversy

A Boy, His Brain, and a Decades-Long Medical Controversy

Published: Mar 25, 2021   |   Author: Gabriella True   |   Category: Blog, News   |   No Comments

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.

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Finding the Right Fit at School for PANS PANDAS

Finding the Right Fit at School for PANS PANDAS

Published: Mar 20, 2021   |   Author: Gabriella True   |   Category: Blog, Personal Stories   |   Tags:   |   No Comments

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!

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