Can I connect with a family challenged by FGS in my area?

YES! The FGSFA has a network of volunteer families who have given permission to share their contact information with other registered families in most USA states and several countries. If you are a registered family, you may request contact information for someone in your area through the FGSFA email address: info@fgsyndrome.org. The traits of FGS affect us all, and thus we can support each other no matter where we live through the listserv. But, even in the USA, culture, available resources, attitudes and Medicaid Law differ greatly from state to state, and sometimes it just helps to talk to someone a little closer to home. We have families in 36 of the 50 states, and many willing volunteers who are willing to communicate with new families.

We also attempt to offer one-on-one support internationally. Several international families touched by FG Syndrome, do not have a working comprehension of the English language. Our English-language web page, and current listserv are not of much benefit to them. Thus a network of bilingual contacts has been established so that these families are kept informed of the latest research and can ask questions through volunteer interpreters. If you know of a family dealing with FG Syndrome who is not comfortable with the English language, please contact us, or get in touch with the FGSFA, Inc. international contact, Irene Marche in Italy. Irene can personally communicate in several languages, or will make every attempt to connect you with someone who speaks your language. She has connections with many of our families spread out across Europe, including families in Ireland and the United Kingdom, where language isn’t an issue, but culture, services and laws differ greatly. Email: olivermar@tiscali.it. We also have several bilingual families in Argentina available to connect with and translate for South American and Spanish-speaking families.

The majority of our families Downunder are not only far-removed from our US based organization, but they live far-removed from each other, and often far-removed from appropriate facilities and services for their kids with FG. Families in Australia and New Zealand should also contact Toni Dicker, tonidicker1@bigpond.com. Not only is she registered with the FGSFA, but is co-founder of The Society of Opitz Families Downunder, for families with GBBB, C & FG diagnosis.

Many of the Canadian families with FGS diagnosis are closer to families in the USA than in their own country. While language may not be a problem for English speaking Canadians, governments and disability law differs so much between our two countries that it is important for Canadians to be in touch with other Canadians.