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The Sotos Syndrome Support Association is a 501(c)(3) tax-exempt organization that is run completely by volunteers.  Everyone who “works” with the SSSA is a family member of an individual diagnosed with Sotos or a similar syndrome.  No one is paid.   Any donation you make to the organization is greatly appreciated and tax deductible.

Any general donation will be used to support our regular program expenses, such as producing our Annual Conference, sending out a monthly email newsletter, educating families and professionals with written and digital information on Sotos syndrome and offering a toll free phone line of support manned completely by volunteer families.

You can also direct your donation to be used in support of our conference assistance fund or our technology fund.

Our Carol Richey Assistance fund was establish in 1995 in memory of the mother of an individual with Sotos syndrome.  Carol was one of our group’s founders and instrumental in establishing our organization in 1991.  The fund is used to assist needy families that want to attend our conference for their very first time.    The fund will pay registration fees and hotel for up to two adults and two children.  Each year, anywhere from four to 14 families have received assistance to attend a conference.

The Williams Family Technology Fund was established in 2008 by one of our member families.  This fund is used to support projects that we undertake to leverage technology to benefit our families and programs.  The first project supported by this fund was to create the video Sotos Syndrome: A Journey from Diagnosis through Life.

How the SSSA Benefits from Your Gift

$25 Pays for one month of our toll-free phone line: (888) 246-SSSA.  This phone line usually rings into the home of one of our veteran members.  On average 10 calls per month are received asking all sorts of questions such as “Where can I join?” to “How do I handle my pre-teen?”.
$50 Helps pay for gifts for the speakers who donate their time at our Annual Conference.  Speakers range in experience from geneticists, such as Dr. Brad Schaefer from the University of Arkansas, to therapists or social workers from the area.
$100 Helps pay for our web site hosting.  On the web site, individuals can learn about Sotos syndrome, join the SSSA or purchase an informational DVD or Handbook.
$150 Pays conference registration for one person to attend our annual conference.  Our conferences are moved around the U.S. and Canada to make it easier for families from different parts of the world to attend.
$300 Pays for the children’s entertainment hired for the Friday night family dinner that starts off each of our conferences.  The Friday Night Dinner is where family networking begins and newly diagnosed families are able to see they are no longer “alone”.
$500 Pays for genetic counselor and Advisory Board member, Becky Anderson, to participate in our conference, present to our participants and discuss issues with families one-on-one.
$1,000 Brings Dr. Trevor Cole to our conference from Birmingham, England.  Dr. Cole is a geneticist and also a member of our Advisory Board.  He has authored many papers on Sotos syndrome and has been meeting families and presenting at our conferences for over 20 years.

To Donate by mail please send a check to: SSSA, P.O. Box 4626, Wheaton, IL 60189



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