Pope Francis in Rome had an audience on November 13th with families involved in organizations that deal with people that have rare diseases. Some families attended from the Sotos Syndrome support group, organized in Italy.  Here is a photo of Pope Francis greeting one of the children.  The support group in Italy is called ASSI Gulliver - Associazione Sindrome di Sotosand was organized just over one year ago by Rossana Burbi.  They have a Facebook page and a web site www.assigulliver.it.  They organized a family get-together this past spring and 25 families attended.    

Do you already give to United Way???

If you donate to United Way through your company, why not direct those funds to a charity that you are involved with???  The SSSA is a 501(c) (3) tax exempt organization through the IRS.  In the fall, when your Human Resources Department hosts a United Way campaign, ask them to direct the funds to the Sotos Syndrome Support Association, P.O. Box 4626, Wheaton, IL 60189.  If your employer needs our Tax ID number or documentation necessary to prove our tax exempt status, just contact the SSSA at treasurer@sotossyndrome.org or call our toll free phone line (888) 246-7772 and we will be glad to send you the supporting documentation.