Point of Contact Communication Project
We are currently building a world-wide communication structure, and are looking for FOXG1 parents to step up and assist with data collection and communication. Check out this slideshow for more information; if you’d like to volunteer, please contact Jennifer at jennifer.leonard@foxg1.org.
If you are new to your FOXG1 Diagnosis, please contact one of our Point of Contact (POCs) to update your information in our contact database.
We have three worldwide regions:

Europe, Middle East and Africa (EMEA), with Regional POC (R-POC) position currently open
EMEA Region:
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Arab States of the Persian Gulf
Nora El Kaid, elkaidn@yahoo.fr
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Belgium
Ralf Leesen, ralf.leesen@gmail.com & Ondine Quackelbeen, ondinequackelbeen@gmail.com
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France
Stephanie Reynier, stephanie.reynier@gmail.com
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Germany
Marco Kobush, marco.kobusch@t-online.de & Tina Kouemo, Burri.tina@gmail.com
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Georgia
Meriko Kavtuashvili, meri.kavtuashvili@gmail.com
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Hungary
Lili Portoro, lili.portoro@gmail.com
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Iceland
Hildur Siguroardottir, hildurbrynja@hotmail.com
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Italy
Stefania Cuccarolo, stefania.cuccarolo1@gmail.com & Giulia Dynya, giuli_s_m@libero.it
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Norway
Christine Nilsen, Christine.elise.nilsen@hotmail.com
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Spain
Pura Gamo, arena_2_5_@hotmail.com
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Sweden
Katarina Boström, kaabo@hotmail.se
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Switzerland
open position
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UK
Konnie Shankar, konikasn@gmail.com & Judith Sheppard, ju.sheppard@btinternet.com
Open positions:
- Denmark, Israel, Netherlands, Portugal, Slovakia, Switzerland, Turkey
Asia/Pacific (AP)- R-POC position is open to applicants
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Asia/Pacific:Australia
Denise Kascak deja1@bigpond.net.au
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Taiwan
Angela Liu, angeliajazz6@gmail.com
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New Zealand
Jennifer Leong, Jennifer.leongnz@gmail.com
Open positions:
- India
Americas, with Jennifer Leonard, R-POC and IFF’s Director of Family Advocacy
Americas
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Canada
Open Position
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South America
Leticia Piccoli Tergolina, lepiter@gmail.com
The USA has been broken down into six regions:
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Midwest
Julie Rognstad, julierognstad@gmail.com (Ohio, Michigan, Indiana, Illinois, Wisconsin, Missouri, Iowa, Minnesota, North & South Dakota, Nebraska & Kansas)
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Northeast
Elisha Hamburger – mrshamburger79@gmail.com (Maine, Vermont, New Hampshire, Massachusetts, Connecticut, Rhode Island, New Jersey, New York & Pennsylvania)
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Rocky Mountains
Deborah Nettles, DEBBIEREESE@msn.com (Montana, Wyoming, Colorado, Utah, Nevada & Idaho)
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Southeast
Stacey Bumpus, sbumpus73@gmail.com (Delaware, Maryland, Virginia, West Virginia, North & South Carolina, Georgia, Florida, Alabama, Mississippi, Louisiana, Arkansas, Tennessee & Kentucky)
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Southwest
Rashaan Hoggard, raine4398@gmail.com (Texas, Oklahoma, New Mexico & Arizona)