Where is FlaGStone?

January, 2012

Dear Families and Friends,

FlaGStone is on hiatus. We discussed its benefits at our 2011 meeting of the Board of Directors and the decision was made to officially suspend FlaGStone as a resource at this time.

When the newsletter began in October, 1999, technology was quite limited, and many folks did not even have PCs. Thus FlaGStone became the main resource for FGS for many of our families. We wanted a personal connection between families so that they could see that they were not alone with the challenges and successes that come with every aspect of FGS. There was also that need for families to feel comfortable sharing details of their lives with FGS as a way to educate themselves and each other.

While the Yahoo listserv offered a great service for instantly connecting with the group with questions, comments and shares about the syndrome and our children affected by it, there was also concern about sharing too much as folks considered privacy issues of their children on the Internet. A postal mailing for only the eyes of those who truly wanted and needed information about FGS and would respect the privacy of others seemed to be the best alternative. Since FlaGStone required mailing in a subscription form with a suggested donation of $15 (waived if you couldn’t afford it), we felt we reached that level of privacy and true interest.

But, the times, “they are a’changin,’” as the old song suggests. When we noted a decline in subscriptions a few years ago, we reorganized the registration system so that, as a registered family, you had the option to receive FlaGStone for free by taking some time to return a form (again limiting our subscriptions to only those folks who really wanted this resource…assuming they would respect each others’ privacy). Initially, a lot of folks who had been “lost” jumped back on the FlaGStone bandwagon, but we noted that new families weren’t signing up for the FlaGStone option.

Even more of a struggle over the past couple of years was collecting articles for the newsletter as folks stopped contributing to FlaGStone. I have always maintained that FlaGStone was YOUR newsletter, not MINE. I just put it together! In the past, I had no problem filling a 10-14 page newsletter with interesting articles from our families, but, new articles these days are rarely forthcoming.

Why? In the past, we were a group of parents desperate for any information about our kiddos in a time when FGS was an uncommonly known syndrome and communication with professionals was tough! So, we educated ourselves, seeking each other out for information, with FlaGStone as a perfect format to compile our shared experiences. In this era, parents are more accepted as part of the team of professionals dealing with our children, thanks to the persistence for that right by those who came before us, thus we are educated as part of that team. Today we are fortunate to have tons of information instantly available to us right at our fingertips through the Internet (and to share with those professionals who still ask, “what’s FG?”). If we need a personal opinion from parents who have been there, it is only a few keystrokes away through our electronic resources. Thus the need for a paper newsletter appears to be less essential.

For me, personally, that change is okay! I’ve had a fun time as editor, and feel proud and privileged to have served the organization in this way. But, my labor of love has become simply a labor, and it might just be a good time to move on. We invite you to share your thoughts about FlaGStone, either through this resource or you can send personal questions/ comments to us through info@fgsyndrome.org. Your responses might determine whether or not this is just a temporary hiatus, or that FlaGStone has indeed run its course!! Love to hear from you!!!

Jackie Morford
FlaGStone editor