Letter from the President-Jan 2012

It’s a new year and a new look! Welcome to the first edition of The FG Syndrome Family Alliance eNewsletter. Please read on for the latest information about FG Syndrome and the FGSFA, including changes and research study updates. Wishing all of our families, friends and professionals a happy, healthy and informed 2012!


As we start 2012, it is time for an update from the FG Syndrome Family Alliance, Inc. The Board of Directors ended 2011 with its annual meeting on December 27th. A few key points (with more details to come as the year progresses):

    • A report shared by Dr. Opitz, on the continuing FGS3 project headed by Dr. Jorde at the University of Utah. The FGSFA chose to fund this search for the FGS3 gene, and we are pleased to announce that, while it is taking more time than Dr. Opitz had hoped, the project continues. Patience everyone, as we wait for end results!

    Facebook! We want to officially thank Dawn Chandler, past member of the Board, for initially creating and recently updating the FGSFA Facebook page. It has seen a great deal of action over the past few months. But, also a reminder that the YahooGroups listserv forum is still a good source for sharing if you don’t “do” Facebook, or for those longer messages that don’t quite fit the “facebook” prototype of brief informal chat. Sign up for both! (The listserv through the website: www.fgsyndrome.org and just access the FG Syndrome Family Alliance page as a friend on Facebook).

    • Our need for new folks to step up and volunteer for the Board over the next year. It’s really not a scary thing. You already meet the qualifications if, as a person interested in FG Syndrome, you can offer your enthusiasm, your thoughts and a few hours of time to help keep the FGSFA functioning!!

    • And finally, trading my President hat for my Editor beanie, this letter explains in more detail the Board’s decision to suspend publication of FlaGStone for now. For those of you who never chose FlaGStone as an FGSFA resource and thus are not familiar with it, you can still read about its contents here.

We wish all of you the very best of health and happiness in 2012.

Jackie Morford
FGSFA President (on behalf of the Board of Directors).

January 2012 News

View this link for information about FlaGStone