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The FGSFA Newsletter

In the fall of 1999, Jenn Crowl and Jackie Morford published the first issue of FlaGStone, the official newsletter of the FG Syndrome Family Alliance, Inc. This quarterly publication is a blend of scientific feedback, family support, parent education and humor! Each issue features an individual with the syndrome, information on traits of FGS, tips on special education advocacy, helpful hints for living with disabilities, special health care needs, and breaking news from FG researchers. In the fall of 2009, the Board of Directors changed FlaGStone to a free-of-charge publication; available by request to all who register with the FGSFA.

WHY FlaGStone?
The founding editor ran across the word “flagstone” while searching Webster’s New World Dictionary for a word or phrase that included the letters F, G & S. Webster defines “flagstone” simply as a flat paving stone. What an appropriate definition for so many aspects of our lives with FG syndrome! Each congenital anomaly afflicting our children is a separate piece – a FlaGStone – requiring its own special treatment and attention. Laid side by side, these anomaliesand traits pave the way to a diagnosis of the FG syndrome. We rely on geneticists world-wide to perform the tedious tasks of gathering information and mapping the FG gene(s), slice by slice, stone by stone, paving a trail toward successful DNA identification which will benefit our families as well as our future generations.

Those first smiles, first words, first steps, first laughs from our children are each miraculous FlaGStones – steps in the slow and steady process of their unique development, paving the way to the persons that they will become. Each family is a FlaGStone – one simple paving stone that is somewhat limited and insignificant by itself. Place us side by side and we will pave the world with our knowledge, our hope and our determination. Should one stone crumble a bit under the pressure, those next to it will be there to hold it together, creating a vast highway of love, education and support.

Besides the most current research and medical information on FGS, FlaGStone is made up of articles from families like yours on anything and everything that affects your life as you deal with the challenges and rewards of raising a child with disabilities. Please consider submitting articles. The following are features for which we welcome contributions. Send articles anytime to Jackie at

SPOTLIGHT ON: In each issue, FlaGStone shines the Spotlight on one or more individuals with the FG Syndrome. This is an “up close and personal” article with a picture, profile and personal story. We have some pretty special guys and gals in our FGSFA family and it is fun to meet them in the “Spotlight.” Many families who have never met others with the FG syndrome are amazed at the similarities amongst our FG population – in looks, traits and actions. This personal introduction to others dealing with the ups and downs of disabilities has made this feature the most popular in FlaGStone. If you would like your child to shine in our “Spotlight” please contact the editor.

SPOTLIGHT ALUMS: This feature is much like a “where are they now” feature – looking into the life of a past Spotlight star and finding out what he/she is up to 5 or more years later. A great deal can happen in 5 years. Spotlight toddlers are in school, those 10 -12 year olds are teenagers, and teens are now adults! Thus, readers will always get a glimpse of an answer to a question all parents ask. What will the future bring for my FG child and for me?

FAMILY GIGGLES! Send us your child’s giggles – those humorous kid quips and anecdotes that make life fun with an FG Guy or Gal, with their quick wits and whimsical personalities. “Family Giggles” is one of the favorite features in FlaGStone.

HELPFUL HINTS: Do you have a “helpful hint” – a practical solution to resolving one of life’s little hassles and helping our kids in their daily life? Please share!

OUR FOUR LEGGED FRIENDS: Animals have enriched the lives of many of our children. Families are invited to share those special experiences and relationships in this column. Is there a special critter that has befriended your child? Send your stories about your child’s favorite 4-legged friend to the editors.

KUDOS, MILESTONES AND MEMORABLE MOMENTS: There are times in our life when something special happens – sometimes a simple thing, like a day at the park. Sometimes a big thing, like achieving an award. Who more than parents who have “been there” can appreciate a long-awaited first step, first word, or simply recognition of a skill? FlaGStone families have bragging rights!! Not only for those accomplishments of their kids with FGS, but their “typical” sibs and yes, even special achievements by the parents. Please share your pride with our FlaGStone family.

BOOK REVIEWS: We appreciate all reviews on books that you have read that will benefit our kids in some way.

SIBS SHARE: We welcome contributions from sibs of kids with FGS…what it is like growing up in this unique situation, a special time they shared with their sib, their viewpoint on a particular issue from the sibling perspective, and of course their own special achievements in life.

ARTICLES FROM ALL OVER: FlaGStone owes its success to the contributions of its readers. Not only are registered families encouraged to submit articles for regular features, they are also asked to submit articles on any topic that would benefit families dealing with the FG syndrome. We have published articles from all over the USA, as well as from Europe, Australia, South America and Canada, written by family members with expertise or experience on the topic. These have ranged in subject matter from emergency hypotonia issues to the joy of music therapy. If you have expertise or information in an area that would be of interest to our Alliance family, please consider writing an article.

Donations are greatly appreciated: For those who are able to contribute, your donations will help ensure that we can continue to provide this listserv and other information to our families and friends well into the future. Please consider making a tax-deductible (as allowed by law) donation to the FGSFA, Inc., either by check to the above address, or by clicking the link, above. Thank you for supporting the FG Syndrome Family Alliance, Inc., a 501(c)3 organization. Company information available by request.colinresized

The FG Syndrome Family Alliance, Inc. is a 501(c)(3) nonprofit organization, EIN#: 93-1307299. Additional corporate information is available by emailing us at