Sarah Zhang Lupus has long been considered incurable—but a series of breakthroughs are fueling hope. Lupus, doctors like to say, affects no two patients the same. The disease causes the immune system to go rogue in… Read More
The Alex Manfull Fund welcomes distinguished scientists to Inaugural Medical and Scientific Advisory Board
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
Commentary: Here’s why Memorial Bridge will be lit green for PANDAS/PANS Awareness Day
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
Why Caregivers’ Mental Health is Suffering
Caregivers of children with mental illness are struggling. What can bedone to help? by Sheilah M. Gauch Posted September 20, 2023 | Reviewed by Devon Frye KEY POINTS In my last two articles, I discussed chronic… Read More
Supporting the Whole Child
Identifying new pathways to help more children. by Sheilah M. Gauch Posted November 25, 2022 | Reviewed by Ekua Hagan KEY POINTS We are at a pivotal moment regarding support for children right now. The systems designed to help… Read More
Wines From France And California Raise Awareness For A Disease Called PANDAS
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.”…
Provence WineZine: Alex’s Wine
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…
À Table! Château Barbebelle and Gérard Isirdi Come to the Table To Raise Awareness about PANDAS, The Post-Infectious Autoimmune Basal Ganglia Encephalitis That Took the Life of Alex Manfull
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.
À Table! Château Barbabelle and Gérard Isirdi Come to the Table To Raise Awareness about PANDAS, The Post-Infectious Autoimmune Basal Ganglia Encephalitis That Took the Life of Alex Manfull
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.