LIFESTYLE Portsmouth HeraldPublished 2:00 p.m. ET Dec. 13, 2023 | Updated 2:01 p.m. ET Dec. 13, 2023 PORTSMOUTH — The Alex Manfull Fund, a leading nonprofit combating infection-associated immune-mediated neuropsychiatric disorders like PANDAS and PANS, has… Read More
Susan Newman Manfull | Guest ColumnistPublished October 7, 2023 Portsmouth’s Memorial Bridge will be illuminated green Monday night in recognition of PANDAS/PANS Awareness Day. In our state and across the nation, Oct. 9 is designated to… Read More
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By Jill Barth – Contributor
Food and Drink
Published October 9, 2020
When Alexandra “Alex” Manfull passed away in 2018 at 26 years old, her parents barely understood the condition that took her life. Susan and William “Towny” Manfull’s daughter was living in Washington D.C., pursuing a successful career in finance. She was a runner and reader, a proud graduate of Princeton University and Phillip Exeter Academy. She was bright and kind, and gone too soon.
Alex suffered from a disease called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and the Manfulls weren’t the only people unfamiliar with the condition—many physicians, parents and educators hadn’t even heard of it. “It’s not covered in medical schools, not a part of the curriculum,” says Susan. “We are doing work on seeing that changed.”…
Tacos and wine aren’t your average pairing. But Alex wasn’t your average young woman.
This month, my pairing is dedicated to the memory of Susan and Towny’s daughter, Alex, who died from complications from PANDAS (Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections). October is PANDAS Awareness Month.
If you have or know a child, teen, or young adult who—after a bout of strep throat—is suddenly exhibiting symptoms of OCD, ADHD, motor or verbal tics, separation anxiety, mood changes, sleep disturbances, skin disorders or even a change in handwriting, you should ask the question: could this be PANDAS? Make an appointment with your physician, and ask. Wouldn’t it be better to be wrong than risk not having asked? For more information, please visit the…
The above title would be (more) unwieldy if I included all the names of the friends, family, and strangers who have contributed to making the À Table! project a reality. There are many people to whom my husband and I are deeply grateful. With the launch of this project, more people can help to raise awareness about PANDAS and PANS: purchase a bottle of the wine, made especially for The Alex Manfull Memorial Fund, invite friends and family to your table, and enjoy the wine with a meal as you help spread the word about this horrific disorder. Raise your glass to the defeat of PANDAS and send us a photo that can be posted online on Alex’s birthday, September 7th. All proceeds will go to further research on the causes and treatment of Post-infectious Autoimmune Basal Ganglia Encephalitis disorders such as PANDAS and PANS.
There are no words to describe how my husband and I felt when our 26-year-old daughter, Alexandra “Alex” Manfull, lost her life to PANDAS, a basal ganglia encephalitis disorder triggered by Group A Streptococcus. Devastated may come closest. Alex was our only child and we were a very close family.
The above title would be (more) unwieldy if I included all the names of the friends, family, and strangers who have contributed to making the À Table! project a reality. There are many people to whom my husband and I are deeply grateful. With the launch of this project, more people can help to raise awareness about PANDAS and PANS: purchase a bottle of the wine, made especially for The Alex Manfull Memorial Fund, invite friends and family to your table, and enjoy the wine with a meal as you help spread the word about this horrific disorder. Raise your glass to the defeat of PANDAS and send us a photo that can be posted online on Alex’s birthday, September 7th. All proceeds will go to further research on the causes and treatment of Post-infectious Autoimmune Basal Ganglia Encephalitis disorders such as PANDAS and PANS.
There are no words to describe how my husband and I felt when our 26-year-old daughter, Alexandra “Alex” Manfull, lost her life to PANDAS, a basal ganglia encephalitis disorder triggered by Group A Streptococcus. Devastated may come closest. Alex was our only child and we were a very close family.