A 5K fundraiser will run through Highland Village coming up on Feb. 10 to benefit a new Texas nonprofit that aims to help children with rare autoimmune illnesses.
Lisa Hardy, of Argyle, recently founded the Children’s Autoimmune Brain Disorder Association, which wants to close gaps in treatment, knowledge and support for Texas families with children suffering from these illnesses.
Hardy’s son, Mitchell, had vague symptoms similar to autism as a young child, including mutism and an eating disorder. When he was 6, he had a “complete personality change,” Lisa said. He became aggressive, had hand tremors and a lack of awareness.
Lisa and her husband, Scott, took Mitchell to many different doctors, including psychologists and psychiatrists, but the medications and therapies were not helping until they eventually found help at Duke Children’s Hospital’s autoimmune Brain Disease Clinic in North Carolina.
Mitchell was diagnosed with Autoimmune Encephalitis, an autoimmune brain disease that causes an abnormal immune response to a strong immune stimulant, such as a virus or bacteria. He responded well to treatments, and his symptoms improved.
His condition began getting even better about six months ago. Today, at age 13, Mitchell is “the healthiest he’s been in a long time,” Lisa Hardy said. “I’d consider him in remission from Autoimmune Encephalitis.”
Autoimmune Encephalitis is on a spectrum of brain illnesses related to malfunctions of the immune system in which the immune system attacks the brain causing a wide range of devastating, rapid-onset neurological and psychiatric issues. Autoimmune brain disorders, such as Autoimmune Encephalitis (AE) and Post-infectious Autoimmune Encephalopathy (PAE) seriously impact the health and well-being of children. PAE includes Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) which the national PANDAS Network estimates affects 1 in 200 school-aged children. These little known disorders are associated with bacterial, viral and environmental triggers and cause rapid onset Obsessive/Compulsive Disorder (OCD), eating restrictions along with severe behavioral deterioration, motor abnormalities, anxiety, rage and depression.
The Hardys want to help people avoid the delays to diagnosis and treatment from years of misdiagnoses their son experienced. Autoimmune diseases are not well-known or understood, and they want to help fund research and spread awareness.
“When we moved here from Georgia in June of 2016, we found it challenging to find a specialist to understand and treat our child’s ongoing, previously diagnosed symptoms,” Lisa Hardy said, but we are now with a great pediatric practice, located in Flower Mound. Mitchell’s pediatrician has been a great help in transitioning from Duke to Texas specialists.
The Hardys were also able to find other parents with similar stories, all struggling to find resources for their children’s health while facing the difficult day-to-day challenges living with these illnesses.
This experience made Lisa, a Surgical Intensive Care nurse, realize the need to launch the nonprofit. She pulled together board members from Dallas/Fort Worth, San Antonio, Houston and Austin with a wide range of range of backgrounds yet a common desire to launch CABDA Texas in July 2017.
CABDA aims to raise money for autoimmune disease research and care, as well as raise awareness and provide education about these illnesses for parents, doctors and teachers.
To help achieve its goals, the association is hosting its first fundraiser, the CABDA for Children 5K and 1K Fun Run, planned for Feb. 10 at Doubletree Ranch Park in Highland Village. The timed run is on a flat, fast course. With pre-registration, the event is $30 for adults and children 13+, $15 for children ages 5-12 and free for children 4 and under, and in the link provided, there is a promo code for a $5 discount. The event will include music and food, and participants will receive a race medal, t-shirt and free finisher photos. Special awards will be given to winners in different age groups. A virtual run option is also available for out-of-area adults and kids.