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S.O.F.T. (Support Organization for Trisomy)
INFORMATIONAL
SHEET
COMMUNITY SUPPORT -
VVA CHAPTER 20
Name of
Organization:
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S.O.F.T. (Support Organization for Trisomy 18, 13 and
Related Disorders)
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Address:
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2982 South Union St.
Rochester, NY 14624
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| Phone: |
585-594-4612 |
| Contact:
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Barbara VanHerreweghe, President
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| Email: |
barbsoft@rochester.rr.com |
| Website:
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www.trisomy.org |
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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