Hello my Friends,

When I became President last July I was handed a box that had some documents in it about the early days of the SSSA. It was fascinating to me to read it. I thought I would share some of what I learned with all of you. It's time for a History lesson but don't worry there won't be a test. Lol

The SSSA was founded in 1988. The first President was a woman by the name of Gwyn Rogers. Ironically enough she had a son named Daniel. It seems that as early at 1984 she was writing letters to Dr. Juan Sotos (the Dr who discovered Sotos) and asking him if there was an organization or support group for children with SSSA. She was told that there wasn't. I suspect that's where the idea to start the SSSA began. 

Originally your membership dues paid for a Newsletter, and a conference. The membership fee was $25.00....not much has changed that way. The earliest conference records I could find were from 1990. It was on a hand written sheet and it looks like it only cost about $5500.00 to put on the conference that year. That's a lot different then the usual $39,000.00 it usually cost us.

The other thing that struck me was the surveys they did. They sent out surveys to find out how many SS kids had behavior issues. Seems that the research back then was just starting to suggest that SS kids might have behavior issues. Seems the SSSA gave the Drs (Dr. Cole was involved with us way back then) a way of tracking more kids with SS. 

The other interesting thing is the way they had to make contact with other families back then. I mean think about it....there was no internet. They had to write letters and publish them in national magazines to find families dealing with SS. I am including one of them here:

We are looking for families who have a child diagnosed with Sotos syndrome, also called Cerebral Gigantism. Our five year old son, Danny, has many of the syndrome's symptoms, including advanced growth, mental retardation, delayed speech, poor coordination, a delayed hearing response, epilepsy, and an enlarged heart.

Fortunately, Danny was able to attend an Early Childhood Education program for several years, and is being mainstreamed into a regular kindergarten class this fall. We are extremely proud of his progress, and he brings his older five siblings, as well as us parents, enormous doses of joy each day.

We are interested in forming an organization to provide support and ideas for families coping with children who have Sotos Syndrome. 

I can't find any membership numbers from the first year but I do know that in 1991 they sent out a survey to 118 families. I assume that's the membership number.   I won't have the exact numbers until after our mid winter board meeting but I do know it's a lot higher than that. 

Wherever Gywn, Daniel, and the rest of the Rogers clan is today I think we all owe them a debt of gratitude. A family united in helping a Special needs child is a powerful thing. The SSSA is living proof of that.

Sincerely,

Kellie Penny