Tag: PANDAS

Lighting Up for PANDAS/PANS

Community NewsPublished October 22, 2024 PORTSMOUTH — If you happened to cross over or view the World War I Memorial Bridge connecting Portsmouth and Kittery last week, you might have noticed that all of the bright… Read More

‘Let me die’: the mysterious syndrome changing children overnight

Doctors are uniting to find a cure for Pandas, a disorder that arrives ‘like the flick of a switch’ and torments children as young as three Louise Eccles | Sunday May 05 2024, 12.01am BST, The… 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

Technical Report: Self-Harm and Suicidality in Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) and Immunopsychiatric Disorders

My brief thoughts: Gunilla Gerland, ex-Chair of SANE, the Swedish PANS/PANDAS organization (2013-2020), recently translated her (2021 – 2023) work to create this English version. Although a difficult subject about which to read, it is a… Read More

Portsmouth parents who lost daughter Alex Manfull at 26 bring PANDAS symposium to city

by Karen DandurantPortsmouth HeraldPublished September 30, 2022 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… Read More

New Massachusetts advisory council to help kids with rare condition, local moms raising awareness

An article in the Boston Herald about an amazing, persevering group of women — with some help from State Reps like Josh Cutler — accomplished what some thought impossible: the establishment of an advisory council on… Read More

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.