Community Outreach
General Information

VA Volunteer Program

Rochester Vet Center Program

S.O.F.T. (Support Organization for Trisomy)

Rochester Day Treatment


S.O.F.T. (Support Organization for Trisomy)



Name of Organization:
S.O.F.T. (Support Organization for Trisomy 18, 13 and Related Disorders)
2982 South Union St.
Rochester, NY 14624
Phone: 585-594-4612
Contact: Barbara VanHerreweghe, President

Mission Statement

S.O.F.T. 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 related chromosomal disorders. Support is provided during prenatal diagnosis, the child’s life and after the child’s passing. S.O.F.T. is committed to respect a family’s personal decision in alliance with a parent-professional partnership.

Use of Funds Donated:

S.O.F.T. serves many families in different ways. The money is used to support the 800# allowing families that have overstretched medical budgets to call at no cost. A quarterly newsletter is distributed to allow families to keep in touch. They provide telephone support to families with volunteers who have experienced the same issues their family is experiencing. They have a surgery database that allows families to contact other families that have had a specific surgery for their child and talk about the results and pros/cons of that surgery. There are 4 books available that only come from them, all written and approved by their Medical Director and Board. They provide new family packages to families free of charge so they receive the needed info to make the necessary decision for their child. They have a website for families and professionals to find them. They have an international conference every year (2004 will be back in Rochester). It has been described as a safe, family-like experience for families, with workshops for education of the disorders and helping parents better care for their children when they return home. Free medical clinics with 3 specialists per child; balloon release for the children that passed away. Everything accomplished by S.O.F.T. is with a totally volunteer staff.

$$ Received by Chapter 20:

$5,000 for the 1st conference in 1999
$1,000 for several years after that
Total Donation since inception $10,000



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