ASPIRE makes its public debut at International OCD Foundation Conference
ATLANTA, GEORGIA—JULY 15, 2019—PANS and PANDAS are terrifying autoimmune disorders that affect children, often featuring the onset of obsessive-compulsive symptoms and eating restrictions, severe separation anxiety, anorexia, irritability, mood swings and behavioral regression (acting younger than usual). Parents report massive, dramatic changes in their children, who are often mis-diagnosed for long periods of time.
A new attempt to fight these disorders, the Alliance To Solve PANS and Immune-Related Encephalopathies (ASPIRE) is making its public debut at the upcoming International OCD Foundation Conference, July 19-21 in Austin, Texas.
ASPIRE, a nonprofit, is dedicated to improving the quality of life for those affected by PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus), PANS (Pediatric Acute Onset Neuropsychiatric Syndrome), and immune-related encephalopathies through the empowerment and connection of our community with tools and resources for advocacy, education, support and awareness.
Disorders like PANS and PANDAS are still poorly understood by many medical professionals, and many doctors are not aware of existing diagnostic recommendations and treatment guidelines. Children are often misdiagnosed for years, and families are left scrambling for scarce resources.
“Not only does this cause the child to suffer needlessly, but research suggests that prompt treatment is more effective in addressing the post-infectious, autoimmune encephalitis that causes the symptoms,” says Dr. Susan Swedo, National Institute of Mental Health (NIMH) Scientist Emerita.
ASPIRE seeks to bring together the patient, parent, provider and research communities and act as a conduit to positively help patient outcomes. The Board of Directors of ASPIRE is comprised of proven community leaders with experience in nonprofit development and management, the allied health professions and project management from around the country.
ASPIRE will focus on providing the practical tools to increase advocacy efforts, not only in the doctor’s office, but on a local and national scale to accelerate improvements in diagnostics, treatment, education and legislation. This will ultimately lead to a better quality of life for all children affected.
Come visit the official launch of ASPIRE at the International OCD FoundationConference. The conference will feature presentations on the most debilitating symptoms of Pediatric Autoimmune Neuropsychiatric Disorders, including sessions entitled, ”Multidisciplinary Care for Children with Acute-onset OCD and Neuropsychiatric Features,” and “PANS/PANDAS Support Group for Parents and Loved Ones.”
Please visit our website at www.aspire.care and “Like” us on Facebook. Contact: Wendy Nawara at 630-479-7143 or Jessica Gowen at 404-783-1195 for further information.