The University of Chicago provides testing of the SRCAP gene for Floating Harbor syndrome. is an organization established by two families to help others with this diagnosis.  Here is an article by one of the founders, Deana Swanson, that introduces you to her experience with the creation of their support group organization:

Our son Jesse was 18 months old and weighed only 15 pounds.  He was very tiny and didn’t eat very well.  He had cataracts, crossed eyes, and kidney problems.  We knew something was wrong, but we didn’t have any idea what it was.  Finally, when he was about six years old, a geneticist diagnosed him as with Floating Harbor Syndrome (FHS).  We didn’t have any idea what that was at the time, but have since researched it extensively.  

For a few years I knew of no one else who had FHS, even though I spent time almost every night trying to discover either information or another family who was going through what we were.   Then, I was reading a “Moms to Moms” newsletter and saw that another mother had written in, and her son’s diagnosis was FHS.  I was thrilled and called her that day.  We still keep in contact and, as her son is just a little older than ours, the contact has been very helpful.  She and I decided that since it had taken us years to find each other, that there must be more parents out there whose children also had FHS, and who also had no contact with other families.  We decided to begin a support group.  We put a webpage on the internet and little by little a group formed.  

The Floating Harbor Support Group now has over sixty families from all over the world.  We began a newsletter that very first year, and still publish it about once or twice a year.   About once a month I get an email from a distressed parent, as it is very hard to get information.  The first thing they want to know is how long they will live.  The oldest known FHS adults are in their early fifties, and that is all we know for now.  They also usually ask about how to deal with behavioral issues, as FHS children are rather autistic in nature, and very fickle about almost everything.  We have articles on these topics also posted on the internet. 

A study was begun by a Canadian lab over a year ago to try and discover the gene affected by FHS.  For years high-resolution chromosome testing had been done, but nothing specific had been discovered.  Diagnosing FHS was done by looking at symptoms such as height, bone age, facial appearance, and speech delays, and this wasn’t always ideal.  Our group was asked to participate in a study to identify the affected gene.  We were all very excited when a gene was identified, so that now a simple test can officially diagnose FHS.  We are thankful that it is now available to families who are searching for answers as we were for years in the past. 

Our son is now 19.  He graduated from high school with a special diploma and assists us with janitorial duties at the school where we are employed.  He enjoys taking pictures with his digital camera and making slide shows on his computer.  He also enjoys going to church and visiting with the adults there.  He has been a real blessing to our family, and we are thankful for him and organizations that help special individuals.