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Twin To Twin Transfusion Syndrome Foundation Charity Profile
Twin to Twin Transfusion Syndrome (TTTS) is a disease of the placenta (or afterbirth) that affects identical twin pregnancies.
-TTTS affects identical twins (or higher multiple gestations) who share a common monochorionic placenta.
-The shared placenta contains abnormal blood vessels which connect the umbilical cord and circulations of the twins.
-The common placenta may also be shared unequally by the twins
-The events in pregnancy that lead to TTTS are all random.
-TTTS is not hereditary or genetic, nor caused by anything the parents did or did not do.
-TTTS can happen to anyone.
Twin To Twin Transfusion Syndrome Foundation Volunteer Information
Below is a general list of ways to volunteer. We are also looking for specific skills of those who can help us be published in magazines and have stories in national news shows.
Give out Foundation brochures to your perinatologist and OB/GYN so he or she may have them available for the next family.
Send us the names and phone numbers of the twins clubs in your state so we can compile a national list to increase education about the syndrome and reach more pregnant mothers at risk.
Plan a family gift for when your babies are born (friends and relatives send in donations in your babiesí names to help our programs continue to help the next family.) Many companies provide matching funds, just send us the paperwork.
Become a member of our Circle of Care Group and help sponsor another diagnosed family to receive treatment.
Become a member of The Miracle Miles Program of Midwest Express Airlines. As an organizational nonprofit member, every donation of 15,000 miles earns us a free airline ticket to fly a mother for treatment that she otherwise could not afford.
Have an article printed in your city newspaper and/or national magazines about your experience and have a sidebar about The Twin to Twin Transfusion Syndrome Foundation.
Have the local news do a story about you and your babies (see article section)
Write to authors of pregnancy books. Encourage them to include The Foundation as a resource in the back of their book, and to also include a chapter on the syndrome.
Scan the Internet and ask various pregnancy and medical associations to link to the Foundation on itís page so more families and physicians can find us
Help to pass the assignment of a CPT code for the treatment of laser surgery.
Help to pass Matthew and Stevenís law in Congress to make standard ultrasounds from 16 weeks through delivery for a monochorionic placenta as well as coverage for laser surgery for Medicaid, which denies help to diagnosed families who need to go out of state.
Be a support person to talk to other family going through the syndrome, with special needs, bereavement needs or NICU needs.