Portsmouth parents who lost daughter Alex Manfull at 26 bring PANDAS symposium to city
PORTSMOUTH — William "Towny" and Susan Manfull, who lost their daughter four years ago, have directed their pain into a lifelong mission to understand what took the life of their child and raise awareness that might save someone else's child.
Alex Manfull was 26 when she died in 2018 after suffering from PANDAS (pediatric autoimmune neuropsychiatric disorder). Her parents work to honor her legacy.
On Saturday in Portsmouth, a symposium, entitled PANDAS/PANS: Recognizing, Understanding and Treating Immune-Mediated Neuropsychiatric Disorders, will share new advances and provide an opportunity for clinicians to discuss improving early detection and treatment.
PANDAS is an often-misunderstood condition associated with streptococcal infections. According to the PANDAS Network, it occurs when “strep triggers a misdirected immune response (resulting) in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.”
Albanian doctor Dritan Agalliu was one of the first to identify PANDAS. A neurologist, his area of study was the blood brain barrier and the mechanism that could breach it.
Rapid onset of OCD, anxiety, and tics in children and young adults can be triggered by a strep (streptococcal) infection, however, the underlying cause is not widely recognized or treated, according to researchers and physicians who specialize in post-infectious neuropsychiatric disorders called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome).
Details on PANDAS/PANS symposium in Portsmouth
Saturday's event, hosted by The Alex Manfull Fund, runs from 8:30 a.m. to 6 p.m. at the Portsmouth Historical Society, 10 Middle St. To see the list of speakers, visit thealexmanfullfund.org/symposium, where you can find tickets ($85) and registration information.
Attendees will learn from world-renowned experts how to distinguish immune-mediated mental health disorders from primary psychiatric disorders; the symptoms are similar but the cause is different and requires treatment of the underlying infection (e.g.: strep, mycoplasma, lyme), inflammation, and immunological issues. In addition, the latest research on the role of genetics, the microbiome, and cytokines will also be presented.
Speakers include top clinicians and researchers from across the United States and Europe.
Susan Manfull, PhD, is organizing the symposium.
"We know common infections can set in motion a misdirected immune response that can trigger inflammation in the brain leading to serious deterioration in psychological functioning for some children, as was the case with our daughter, Alex, who passed away as a result of PANDAS." she said. "This research is critical to early recognition of PANDAS/PANS as effective treatment can dramatically improve outcomes."
Alex Manfull's short life honored
Susan and Towny Manfull talked about the progress they have made since Alex's death and about her life.
Growing up, her home was once referred to as "her Petri dish of creativity." She was so industrious that she kept her parents busy with her projects. While in elementary school, her artwork printed on notecards was chosen for the juried Button Factory art open house. She was the youngest participant ever selected.
In third grade, "Miss Tubby Doesn't Eat Cheddar," a story she wrote and illustrated won first place in New Hampshire Public Television's Reading Rainbow contest and was turned into a televised cartoon. In her later years, her creativity focused on painting and photography. She graduated from Phillips Exeter Academy and Princeton University.
"Twice, when she was 10 and 11, she was a guest on the Don Imus show," Susan said.
One of Alex's drawings won a contest to be featured on the back of a Portsmouth trolley.
The locals also knew her through her newspaper, The Animal Tribune. Local businesses purchased ads in the paper. The Portsmouth Herald gave her a press pass that she used to cover the Westminster Dog Show in New York City one year and the Herald published several of her stories on the front page.
Fight against PANDAS a mission
Not continuing to fight against this terrible disease is not an option for the Manfulls.
"Since we began, we have established (The Alex Manfull Fund) as a 501(c)(3) nonprofit," said Susan. 'We now have a terrific board and are committed to continuing our work. It took a long time to get to where we are, particularly after COVID hit and put a stop to a lot of activity. Now we have national and International groups we are working with, people in positions to do legislation that can help. We will find answers to save others."
The Manfulls, working with Georgetown University Medical School, established a brain bank to study the cause and effects of PAN related conditions. It is called POND (Pandas/Pans and other neuroimmune disorders).
"Alex was the first brain donor," said Susan. "Sadly there are now more. We know the research is critical if we ever hope to solve this."
Towny said that until this brain bank, almost all the research has been done using live participants and mice.
"We know if affects a specific part of the brain, so this type of research will make a difference down the road," he said. "If this is diagnosed early enough, the right treatment can be started, maybe in time for a child to recover."