by David Scott Allen
Published October 3, 2020
Winery: Château Barbebelle
Cuvée: Cuvée Madeleine Rouge Special Edition
Appellation: Coteaux d’Aix en Provence
Type: Red
Vintage: 2017
Grape Varieties: 40% Grenache, 30% Syrah, 30% Cabernet Sauvignon
Alcohol: 13.5%
Average Retail Price: U.S. $30, France €15
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 PANDAS Network website.
Susan and Towny are working hard to fund research, and to educate both the public and medical professionals about PANDAS. They created the À Table! Project, designed to help people learn about PANDAS while they gather at the table, something Susan, Towny, and Alex did frequently. (À Table means “come to the table.”) They worked with Château Barbebelle, in Rognes, Provence, France, to release a special edition of their red wine, which we now lovingly call “Alex’s Wine.” The label has a painting of Alex walking down a village street in Provence, by renowned artist Gérard Isirdi. The booklet that comes with the bottle has a lot of good information for you, or for you to share.
The wine is also good to share, especially if you live in a place where small group gatherings are safe. I wasn’t able to share it outside my household, but that did not stop me from enjoying it thoroughly. This well-crafted, ruby-colored wine bore aromas of red currants and stone fruit while there was more red fruit on the palate—raspberry and cherry—with hints of licorice. It has a medium body, and is perfect for summer—or early autumn—grilled meats and poultry. I might also mention that it was perfect with a small square of bittersweet chocolate after dinner.
As I hinted, I paired this complex and lovely wine with tacos. Because Alex loved tacos and this was one of Alex’s favorite summer reds. And because I had Susan’s mother’s recipe for homemade flour tortillas. And because Susan, Towny and Alex often prepared tacos together for their family meals. My tacos are shredded beef and melted onions (not caramelized – really melted!) with avocado, tomato, cotija (cheese), and cilantro, all drizzled with a chive oil. For the recipes, please visit Cocoa & Lavender.
More of Alex’s wine is due in the United States soon. If you are interested, please visit AlexManfullWineProject.org for more information and be sure to sign up on the waitlist so they can contact you when the wine becomes available. Alex’s wine is still available in Provence at De La Cuisine Au 20 in Lourmarin. A portion of each purchase will go to support the Alex Manfull Memorial Fund which is a part of PANDAS Network.
____________
Note: Susan will be part of a panel of speakers for PANDAS/PANS Awareness Day hosted by New England PANS Association. This year, the presentation is a virtual event, of course, and can be watched on Zoom via Facebook Live on NEPANS Facebook page on Friday October 9th fr
Updated: November 25, 2022 by bmanfull@comcast.net
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 PANDAS and PANS … AND the passage of a law requiring insurance companies to cover treatment for these post-infectious neuroimmune disorders. Well done!!! The article features TAMF Board Member Sheilah Gauch.
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Updated: September 7, 2021 by bmanfull@comcast.net
Come back here to catch up on our latest developments
We will be posting relevant information here soon about our latest activities
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Updated: January 15, 2023 by Susan Manfull
Wines From France And California Raise Awareness For A Disease Called PANDAS
Wines From France And California Raise Awareness For A Disease Called PANDAS
By Jill Barth – Contributor
Food and Drink
Published October 9, 2020
https://www.forbes.com/sites/jillbarth/2020/10/09/wines-from-france-and-california-raise-awareness-for-a-disease-called-pandas/#1ea7f9ef7eef
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Updated: November 25, 2022 by Susan Manfull
Provence WineZine: Alex’s Wine
by David Scott Allen
Published October 3, 2020
Winery: Château Barbebelle
Cuvée: Cuvée Madeleine Rouge Special Edition
Appellation: Coteaux d’Aix en Provence
Type: Red
Vintage: 2017
Grape Varieties: 40% Grenache, 30% Syrah, 30% Cabernet Sauvignon
Alcohol: 13.5%
Average Retail Price: U.S. $30, France €15
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 PANDAS Network website.
Susan and Towny are working hard to fund research, and to educate both the public and medical professionals about PANDAS. They created the À Table! Project, designed to help people learn about PANDAS while they gather at the table, something Susan, Towny, and Alex did frequently. (À Table means “come to the table.”) They worked with Château Barbebelle, in Rognes, Provence, France, to release a special edition of their red wine, which we now lovingly call “Alex’s Wine.” The label has a painting of Alex walking down a village street in Provence, by renowned artist Gérard Isirdi. The booklet that comes with the bottle has a lot of good information for you, or for you to share.
The wine is also good to share, especially if you live in a place where small group gatherings are safe. I wasn’t able to share it outside my household, but that did not stop me from enjoying it thoroughly. This well-crafted, ruby-colored wine bore aromas of red currants and stone fruit while there was more red fruit on the palate—raspberry and cherry—with hints of licorice. It has a medium body, and is perfect for summer—or early autumn—grilled meats and poultry. I might also mention that it was perfect with a small square of bittersweet chocolate after dinner.
As I hinted, I paired this complex and lovely wine with tacos. Because Alex loved tacos and this was one of Alex’s favorite summer reds. And because I had Susan’s mother’s recipe for homemade flour tortillas. And because Susan, Towny and Alex often prepared tacos together for their family meals. My tacos are shredded beef and melted onions (not caramelized – really melted!) with avocado, tomato, cotija (cheese), and cilantro, all drizzled with a chive oil. For the recipes, please visit Cocoa & Lavender.
More of Alex’s wine is due in the United States soon. If you are interested, please visit AlexManfullWineProject.org for more information and be sure to sign up on the waitlist so they can contact you when the wine becomes available. Alex’s wine is still available in Provence at De La Cuisine Au 20 in Lourmarin. A portion of each purchase will go to support the Alex Manfull Memorial Fund which is a part of PANDAS Network.
____________
Note: Susan will be part of a panel of speakers for PANDAS/PANS Awareness Day hosted by New England PANS Association. This year, the presentation is a virtual event, of course, and can be watched on Zoom via Facebook Live on NEPANS Facebook page on Friday October 9th fr
Updated: January 16, 2023 by Susan Manfull
Provence Wine Project for PANDAS Awareness À Table!
by Carolyne Kauser-Abbott
Published September 2, 2020
PANDAS Awareness
It took more than a village to bring the À Table! concept together – Susan and Towny Manfull needed a vineyard. In August 2018, Alexandra Manfull passed away, shortly after self-diagnosing her condition as an auto-immune disease that she had coped with for several years. The couple’s grief is unimaginable, but their desire to raise awareness for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus (PANDAS) is unwavering. Lovers of wine, the family had lived in Provence for a while and have returned many times. Susan writes about wines and profiles winemakers for her website Provence WineZine. And, conversations start around the dinner table, which is precisely where the À Table! idea began to formulate.
Read MoreUpdated: January 16, 2023 by Susan Manfull
À Table! PANDAS ~Remembering Alex
SHUTTERS & SUNFLOWERS
TRAVEL TIPS FROM AN ENGLISH GIRL IN CALIFORNIA, IN LOVE WITH PROVENCE.
by Caroline Longstaffe
Published August 19, 2020
The COVID pandemic has consumed us all. My heart goes out to those that have lost loved ones and the debt owed to our health care workers can never be repaid. Globally the world has been tipped on its axis. As it continues to spin it sometimes feels that it will never stop, will life ever return to normal?
For us, amongst other things, we have been disappointed not to be able to travel to Lourmarin. We’ve kept in touch with friends we’ve made there and just recently I heard from Susan and Towny in New Hampshire who like us have a long enduring love affair with Lourmarin. It was wonderful to hear from them but also very humbling as reading Susan’s email I realized that however frustrating and financially challenging the effects of COVID might be, compared to the life changing tragedy they’ve been forced to deal with our problems pale into insignificance.
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Updated: January 15, 2023 by Susan Manfull
Wine sells fast for Alex Manfull Memorial Fund
by Karen Dandurant
news@seacoastonline.com
Published August 2, 2020
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Updated: January 15, 2023 by Susan Manfull
Parents hope wine will help research after daughter’s death
By Karen Dandurant
news@seacoastonline.com
Published July 29, 2020
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Updated: January 15, 2023 by Susan Manfull
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
by Susan Manfull
Published July 23, 2020
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.
Read MoreUpdated: January 16, 2023 by Susan Manfull
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
by Susan Manfull
Published July 23, 2020
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.
Read More