Mission: SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and other related chromosomal disorders. Support can be provided during prenatal diagnosis, the child’s life and after the child’s passing. SOFT is committed to respect a family’s personal decision and to the notion of parent-professional relationships.
Results: About 5,000 families have registered and been helped in some way, with new registrants every week. Any donation you could make would be appreciated. We are entirely non-profit (since 1980) and no one is paid a salary.
Target demographics: Families having children with trisomy 18, trisomy 13 or related chromosome disorders.
Direct beneficiaries per year: over 5,000
Geographic areas served: World-wide
Programs: Education, provision of books and documents (mostly free) relating to the disability, annual conference, webinars, website at www.trisomy.org, and direct outreach to affected families. A quarterly newsletter is published and read by many families and medical professionals.
Supporting families that are going through a very difficult time when waiting for a baby or trying to keep their baby alive. Giving families hope over 30 years serving families with no paid staff
My own child is almost 17 years old, living with full (complete) trisomy 13 and SOFT at Trisomy.org has been a constant support for our family over the years. I go to the website and support groups daily and use and share the wealth of support the SOFT Organization provides with others. SOFT is my go to website and group support when I have questions on upcoming surgeries or medical care. We've been able to attend a few Annual Conferences and I would highly suggest every family attempt to go sometime. I feel SOFT is the the very best support available for expectant parents and the newly diagnosed child and family as well as those caring for living survivors. The support they offer has built a beautiful community of friends. I believe SOFT has been supporting families for over 37 years. They also offer a wealth of resources on current Medical Literature and Publications.
*Natalia's photo was taken July 2016 at the SOFT Conference by Rick @positiveexposure
