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2016 Conference Portland, Oregon

Registration will begin in March

             **2016 Information**

What is Sotos Syndrome

Sotos syndrome is a genetic condition causing physical overgrowth during the first years of life. Children with Sotos syndrome are often taller, heavier, and have larger heads than their peers. read more

About Us

Sotos syndrome Support Association (SSSA) is made up of families, physicians, genetic counselors, and health care agencies throughout the United States. The SSSA is a non-profit organization which is incorporated in the state of Missouri. read more.

Our Annual Conference

Families and professionals come from all over the world to learn, network and bond with one another. We combine a program of speakers with social events for the whole family to educate and inspire families on their journey with Sotos Syndrome. read more

Sotos Syndrome: A Handbook for Families

handbook_coverThe third edition of this 64-page soft-bound booklet includes general characteristics, genetics, medical concerns, educational solutions and family and social matters.  Now available in English and Spanishby Rebecca Rae Anderson, J.D.; M.S., Bruce A. Buehler, M.D., G. Bradley Schaefer, M.D. Purchase

A Journey From Diagnosis through Life

CDThis 30 minute video contains interviews of doctors, families and individuals with Sotos syndrome.  Learn the basic characteristics of the syndrome as explained by experts.  Hear from real people as they describe their experiences and expectations.  NOW AVAILABLE with Spanish, Italian and French subtitling. Purchase


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