ISPID - International Society for the Study and Prevention of Perinatal and Infant Death
ISPID - International Society for the Study and Prevention of Perinatal and Infant Death

International Society for the Study and Prevention of Perinatal and Infant Death

Star Legacy Foundation

Country

U.S.A.

Mission, Goals and Objectives

Who We Are

The Star Legacy Foundation is a 501(c)(3) non-profit organization dedicated to stillbirth research and education. We are a community of parents, families, and friends of stillborn babies who are dedicated to reducing the number of families that endure such a needless tragedy.

Our Mission

The Star Legacy Foundation mission is to increase awareness, support research, education and family advocacy regarding stillbirth.

Our Vision

We believe there is great hope for the future to prevent many stillbirths in the United States and around the world and we intend to bring this hope to light. We envision that through the utilization of technology, education and grassroots efforts, we can empower parents and families to be an advocate for their unborn babies.

We Believe…

  • Many stillbirths are preventable.
  • Expectant parents should be informed about stillbirth risks and educated on ways to protect their pregnancy.
  • Standard prenatal protocols should include a third trimester ultrasound to identify known stillbirth risk factors and subsequent management when risk factors are identified.
  • Prenatal care should be enhanced to specifically look for the high risk fetus in the low risk mother.
  • A national stillbirth registry should be created with mandatory participation to accurately collect stillbirth data.
  • Stillbirth autopsies should be encouraged and performed consistently with established protocols.
  • Stillborn children should be recognized with a certificate of birth resulting in stillbirth.
  • Families deserve and are entitled to support and guidance when facing the delivery of a stillborn child.
  • Stillbirth, birth injury (cerebral palsy and others), premature birth and miscarriages may have some common denominators – finding answers to stillbirth may enlighten the path to reducing miscarriage, premature birth, and birth injury.

History & Background

Star Legacy Foundation was started in 2006 as a group of bereaved families who wanted to raise money for stillbirth research. Since then, it has grown to be a network of health care professionals working together with families and friends of stillborn children. Our mission is to raise awareness, support research, provide education, and promote family advocacy regarding stillbirth prevention and care. Our focus is on the issues faced by developed nations, particularly in the United States. Our entire organization is made of volunteers who are dedicated to supporting stillbirth families and preventing the burden of stillbirth on families and society.

Stillbirth Incidence in the United States

In the United States, 26,000 babies are stillborn every year. This number has not significantly changed in recent decades.

Organizational Activities & Ongoing Projects

We provide education for communities, expectant parents, and health care professionals in a variety of formats and topics. Our speakers bureau allows us to bring experts in specific areas to health care providers who have expressed particular needs. See Me, Feel Me is the patient education program we developed and provide for obstetric providers to use with their expectant mothers. The material is all evidence-based and reviewed by our international Medical Advisory Board.

In October 2011, Star Legacy Foundation hosted the first Stillbirth Summit in Minneapolis, Minnesota. This was a unique conference in that it: 1) encouraged interaction between all researchers and between the researchers and other participants, 2) focused on emerging stillbirth prevention and care topics, and 3) included discussion regarding how to utilize the new information to move the issues forward. Twelve researchers from around the world participated and embraced the format. These researchers collaborated to publish the proceedings of this event in BMC Pregnancy and Childbirth in August 2012.

Plans are underway for the next Stillbirth Summit for June 19-21, 2014 in the Minneapolis, Minnesota area. Health care professionals, researchers, family advocates, and families are all invited to attend. A Call for Abstracts is currently available on our website.

Star Legacy Foundation currently supports and sponsors the Study of Trends and Associated Risks for Stillbirth (STARS) Study. This is an online, controlled study of recent stillbirth mothers to identify common issues of stillbirth pregnancies that merit further study.

Star Legacy Foundation is proud to be a founding member of the Action for Stillbirth Awareness and Prevention (ASAP) Coalition. This is a group of individuals, organizations, and health care professionals who have united to highlight and encourage the stillbirth awareness and prevention efforts currently underway as well as those that need to be accomplished in the developed world and specifically the United States. We currently hold two seats on the ASAP Coalition steering committee.

11 Angels is a project of Star Legacy Foundation that provides care companions to families in Minnesota who are enduring a pregnancy or early neonatal loss. These individuals have all had a personal connection with pregnancy and infant loss, completed training specific to bereavement companioning, and volunteer their time to walk with families who are beginning their grief journey.

To promote stillbirth awareness, we host a variety of events throughout the United States. The Let's Not Be Still! program has included golf tournaments, runs/walks, media days and interviews, celebrity appearances, and more. In addition, we support families who wish to host an event or provide services to hospitals and families in memory of their own child(ren).

Our Vision

We believe there is great hope for the future to prevent many stillbirths in the United States and around the world and we intend to bring this hope to light. We envision that through the utilization of technology, education and grassroots efforts, we can empower parents and families to be an advocate for their unborn babies.

We Believe…

  • Many stillbirths are preventable.
  • Expectant parents should be informed about stillbirth risks and educated on ways to protect their pregnancy.
  • Standard prenatal protocols should include a third trimester ultrasound to identify known stillbirth risk factors and subsequent management when risk factors are identified.
  • Prenatal care should be enhanced to specifically look for the high risk fetus in the low risk mother.
  • A national stillbirth registry should be created with mandatory participation to accurately collect stillbirth data.
  • Stillbirth autopsies should be encouraged and performed consistently with established protocols.
  • Stillborn children should be recognized with a certificate of birth resulting in stillbirth.
  • Families deserve and are entitled to support and guidance when facing the delivery of a stillborn child.
  • Stillbirth, birth injury (cerebral palsy and others), premature birth and miscarriages may have some common denominators – finding answers to stillbirth may enlighten the path to reducing miscarriage, premature birth, and birth injury.

History & Background

Star Legacy Foundation was started in 2006 as a group of bereaved families who wanted to raise money for stillbirth research. Since then, it has grown to be a network of health care professionals working together with families and friends of stillborn children. Our mission is to raise awareness, support research, provide education, and promote family advocacy regarding stillbirth prevention and care. Our focus is on the issues faced by developed nations, particularly in the United States. Our entire organization is made of volunteers who are dedicated to supporting stillbirth families and preventing the burden of stillbirth on families and society.

Stillbirth Incidence in the United States

In the United States, 26,000 babies are stillborn every year. This number has not significantly changed in recent decades.

Organizational Activities & Ongoing Projects

We provide education for communities, expectant parents, and health care professionals in a variety of formats and topics. Our speakers bureau allows us to bring experts in specific areas to health care providers who have expressed particular needs. See Me, Feel Me is the patient education program we developed and provide for obstetric providers to use with their expectant mothers. The material is all evidence-based and reviewed by our international Medical Advisory Board.

In October 2011, Star Legacy Foundation hosted the first Stillbirth Summit in Minneapolis, Minnesota. This was a unique conference in that it: 1) encouraged interaction between all researchers and between the researchers and other participants, 2) focused on emerging stillbirth prevention and care topics, and 3) included discussion regarding how to utilize the new information to move the issues forward. Twelve researchers from around the world participated and embraced the format. These researchers collaborated to publish the proceedings of this event in BMC Pregnancy and Childbirth in August 2012.

Plans are underway for the next Stillbirth Summit for June 19-21, 2014 in the Minneapolis, Minnesota area. Health care professionals, researchers, family advocates, and families are all invited to attend. A Call for Abstracts is currently available on our website.

Star Legacy Foundation currently supports and sponsors the Study of Trends and Associated Risks for Stillbirth (STARS) Study. This is an online, controlled study of recent stillbirth mothers to identify common issues of stillbirth pregnancies that merit further study.

Star Legacy Foundation is proud to be a founding member of the Action for Stillbirth Awareness and Prevention (ASAP) Coalition. This is a group of individuals, organizations, and health care professionals who have united to highlight and encourage the stillbirth awareness and prevention efforts currently underway as well as those that need to be accomplished in the developed world and specifically the United States. We currently hold two seats on the ASAP Coalition steering committee.

11 Angels is a project of Star Legacy Foundation that provides care companions to families in Minnesota who are enduring a pregnancy or early neonatal loss. These individuals have all had a personal connection with pregnancy and infant loss, completed training specific to bereavement companioning, and volunteer their time to walk with families who are beginning their grief journey.

To promote stillbirth awareness, we host a variety of events throughout the United States. The Let's Not Be Still! program has included golf tournaments, runs/walks, media days and interviews, celebrity appearances, and more. In addition, we support families who wish to host an event or provide services to hospitals and families in memory of their own child(ren).

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