Our brains are fascinating.
On my journey as a special needs parent, I learn much about how the brain works through neurologists, behavior analysts, and the power of Google. My fellow parents with medically complex children live in a constant state of brain overload. However, the Richmond network of special needs mothers use this knowledge to be forces for positive change. They brainstorm solutions and direct me to resources for my three autistic children, and they give me hope. These determined moms also introduced me to the PANS Research and Advocacy Initiative (PRAI).
PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome, and 1 in 200 children suffer its effects. In laymen’s terms, an infection (strep, Lyme, or the flu, for example) causes brain inflammation and psychiatric disorders in children. Parents notice a sudden onset of obsessive behavior, anxiety, personality changes, and/or loss of academic skills. PANS is a complicated disorder often misdiagnosed as autism, sensory processing disorder, OCD, ADHD, Tourette’s, even bipolar disorder.
PANS is not contagious, and kids will not catch it from a classmate. But families coping with these ferocious symptoms feel isolated and overwhelmed. PRAI is an organization advocating for Virginia families who suffer from PANS. They provide emotional and social support, invest in research, and raise community awareness. The group serves about 1,000 families across the state with a 100% volunteer force.
How can Richmond support the work of PRAI?
The organization needs volunteers and donors. On Saturday, September 30, 2017, Westchester Commons in Chesterfield County will host the first-ever PRAI 5K presented by Children’s Hospital of Richmond at VCU. Money raised here will fund research and community outreach. PRAI’s ultimate goal is to eventually build a Center for Excellence in Virginia, similar to autoimmune clinics nationwide.
PRAI Founder and President Jessica Gavin has two children diagnosed with PANS. She states,
RVA can support us and PANS awareness by being aware of the signs and symptoms and advocating with physicians for an evaluation when it makes sense to do so. Share the signs with other families, and understand that our kids are very sick.
Whether you run, walk, donate, or cheer on participants, PANS families would love to see the Richmond community support them at the PRAI 5K. Walk-up registration is available the day of the race. For more information on volunteering or donating to PRAI, please visit http://pansadvocacy.org/.