Top Menu

About Us

About Sotos Syndrome


Organized in 1988, the Sotos syndrome Support Association (SSSA) is made up of families, physicians, genetic counselors, and health care agencies throughout the United States and the world. The SSSA is a nonprofit 501(c)(3) organization which is incorporated in the state of Missouri and run completely by volunteers.

The SSSA is a Member of the National Organization of Rare Disorders (NORD).



Our Mission is to provide:

A social support environment for professionals and families of individuals affected by Sotos syndrome so they can meet, exchange ideas and help one another cope with the condition.

An understanding of the condition through education.

A newsletter for members to share ideas, articles, and inspirations.

An annual meeting in which to meet, organize, and discuss association business.

An annual conference for professionals and families to network and gain insight from experts in genetics, neurology, psychology, and education.

An opportunity for professionals working with individuals affected by Sotos syndrome to collect data for research and to meet colleagues.

The volunteers that created the SSSA and continue to run the organization have always been family and friends of individuals effected by Sotos or similar syndromes.  To further its mission, the SSSA provides a number of program services supported by member dues and individuals’ donations.

To answer questions such as “How do I join?” or “What did you do when your child did this?”, the SSSA offers a toll-free phone line 888-246-SSSA (7772).  This rings into the home of a veteran member and parent of an individual with the syndrome.

To facilitate communication, a monthly email newsletter is sent out to all SSSA members who are current with their dues.  Inside, readers will find tips and stories from members, interesting articles from experts and professionals and association business.

To educate family members, doctors, therapists and teachers about Sotos syndrome, the SSSA sells the book Sotos Syndrome: A Handbook for Families and the DVD Sotos Syndrome: A Journey from Diagnosis through Life.  The handbook is available in English and Spanish while the DVD is in English with subtitles in Spanish, French and Italian.

The majority of the SSSA’s focus is spent on the Annual Conference.  One weekend each summer over 250 people get together from Friday until Sunday to learn, network and bond with one another.  A program of speakers, along with childcare and social events for the entire family are offered.  Typically 60 – 80 families attend the conference from around the world.

If you are interested in joining the SSSA click on the JOIN button at the top of the page.  Besides supporting the program services described above, your dues will allow you to receive the email newsletter, SSSA NOTES, and the password to our Members Only section of this web site.


"Don't let what you cannot do interfere with what you can do." John Wooden
"Write your sad times in sand, write your good times in stone." George Bernard Shaw
"Be the change you wish to see in the world." Mahatma Gandhi
"Never believe that a few caring people can't change the world. For indeed, that's all who ever have." Maragaret Mead
"If you see a friend without a smile; give him one of yours." Proverb
"The true measure of a man is how he treats someone who can do him absolutely no good." Samuel Johnson
"Always be yourself because the people that matter don't mind and the ones that mind, don't matter." Dr. Seuss
"A good head and a good heart are always a formidable combination." Nelson Mandela
"A true hero is not measured by the size of his strength but by the strength of his heart." Zeus (Disney's Hercules Movie)
"Where there is charity and wisdom, there is neither fear nor ignorance." Francis of Assisi
"The way I see it, if you want the rainbow, you gotta put up with the rain." Dolly Parton
"Whatever you are, be a good one." Abraham Lincoln
"Good works are links that form a chain of love." Mother Teresa
"Difficult roads often lead to beautiful destinations" Author Unknown
"It all comes to this: the simplest way to be happy is to do good." Helen Keller
"What would you attempt to do if you knew you could not fail?" Robert Schuller
"All you need is love, but a little chocolate now and then doesn't hurt." Charles Schultz
"It does not matter how slowly you go as long as you do not stop." Confucius
"It's nice to be important but it's important to be nice." Unknown
"If you haven't any charity in your heart, you have the worst kind of heart trouble." Bob Hope
"Never let the fear of striking out get in your way." Babe Ruth