|
The Twin to Twin Transfusion Syndrome Foundation is an international,
501c.3. nonprofit organization. All donations to the organization
are tax-deductible. Our Federal Tax ID# is 34-1740578.
The Foundation was created
by Mary Slaman-Forsythe, of Bay Village, Ohio, USA after
her twin pregnancy with twin to twin transfusion syndrome
in 1989. Everyone in the organization has experienced the
syndrome and are working together to fight the disease and
do everything possible to save the lives of future children
and end the suffering brought on by this disease. Mary has
devoted her entire life to fighting twin to twin transfusion
syndrome as a promise to her twin boys Matthew and Steven
on the day of their birth, December 7, 1989.
A
Promise Kept
As seen on this website, the areas of
education and support include newly diagnosed, NICU, special
needs, bereavement and research. We have volunteer coordinators,
working out of their homes, who specialize in each area
to help parents. Stephanie Lerner-Ernsteen is the NICU Coordinator,
Cindy Boudreaux is the Special Needs Coordinator, and Bernadette
Archibald is the Bereavement Coordinator.
Mary is the Founder and President of
the organization as well as the Newly Diagnosed Coordinator.
She helps all the newly diagnosed that contact the Foundation
as well as 12 national coordinators that help her follow
up throughout their pregnancy through the delivery of their
babies. Calls and e-mails come into the Foundation from
newly diagnosed, which Mary responds to (on average 40 newly
diagnosed a month). Many more calls and e-mails are also
responded to from parents ‘after’ their pregnancy
with the syndrome who either never had help with their diagnosed
pregnancy or did not know they had the syndrome until after
birth.
Educational, emotional and sometimes
financial support is given to the diagnosed parents to help
them understand the syndrome, understand where they babies
specifically are in the diagnosis of the syndrome, to create
a medical plan of action to care for the babies, and get
to treatment as soon as possible. We are helping to empower
the families and give them strength and positive encouragement
to take action on behalf of their babies. Coordinators continue
to support the parents through their pregnancy and bereavement,
NICU, and/or special needs support is added if needed. The
purpose is to give, as best as possible, a complete circle
of care through diagnosis, delivery and life after birth.
Mary runs the international office in
Bay Village, Ohio, USA, out of her home, and is also responsible
for the administrative and financial aspects of the organization
including accounting, grants to parents and doctors, fundraising,
correspondence with donors and the organizational and medical
advisory boards. Mary has a Bachelors of Science degree
in Marketing from West Chester University, West Chester,
PA, USA (two years at The University of Kentucky, Lexington,
Kentucky, USA) and a Masters Degree in Nonprofit Management
from Case Western University, Cleveland, Ohio, USA
|
