Research and Awareness Programs
The Shane Foundation funds a maternal/fetal health patient education research grant at Northwestern University Feinberg School of Medicine in the Department of Maternal Fetal Medicine.
The goal is to develop methods and programs to educate the widest possible demographic of women and families, empowering their improved communication with the obstetric community. This is essential because up to 80% of maternal deaths are preventable. A large component of these are related to the failure of patients to recognize and report critical symptoms for the leading conditions adversely impacting maternal/fetal health.
An educated patient can become her own best first line of defense.
Our Programs
The Shane Foundation was launched in 2013 as a partner of the March of Dimes and initially funded the March of Dimes website section on "Blood Clots in Pregnancy" following up with the development of patient educational materials and programing for March of Dimes Perinatal Nurses Conferences in Chicago and Orange County, CA where The Shane Foundation sponsored the keynote address by renown Dr. Mary D'Alton discussing her VTE - prevention protocol recommendation for anticoagulation following all C-section deliveries.
In 2015 The Shane Foundation proudly sponsored a presentation by Olympic athlete Megan Henry, the survivor of a near-fatal hormone-based contraceptive-related pulmonary embolism featured in the 2014 "Vanity Fair" expose by Marie Brenner, "Danger in the Ring" and followed up with the publication of Shane Foundation Co-Founder, Roberta Gold's featured letter published in "Risky Medicine", "Vanity Fair" March, 2014.
This controversy is on-going as the US pharmaceutical industry continues to largely avoid the issue.
Patient Advocacy
in 2016, The Shane Foundation Co-founder, Roberta Gold was appointed to serve as "Patient Advocate" for the Stanford University-based "California, Maternal Quality Care Collaborative", (CMQCC) in their development of their 2018 "Maternal VTE Toolkit" protocol for the diagnosis and treatment of Venous Thromboembolism in Pregnancy. This "Toolkit" has gained national recognition.
In that year, The Shane Foundation also became a member organization of the "Coalition for Women's Health Equity".
In 2017, Roberta was appointed to serve a three-year term as "Patient Advocate" for the Washington DC -based national "ACOG Council on Patient Safety in Women's Health Care" where The Shane Foundation proposed that the Council undertake the creation of a "visual learning" maternal health patient education program focused on critical symptoms for the leading causes of maternal deaths. Subsequently, Roberta was appointed to co-chair the development of the AIM "Urgent Maternal Warning Signs" program, also published by the CDC under the title of "Hear Her".
The Shane Foundation continues to develop innovative "Visual Learning" maternal health patient education programming.
Research Funding:
In 2017 The Shane Foundation funded a major research investigation at Hadassah Medical Organization in Israel "to address maternal complications of thrombophilia, a significant cause of maternal and fetal morbidity and mortality" and how this might lead to the development of Preeclampsia as a multi-step progression.
In 2019 The Shane Foundation began funding a maternal/fetal health patient education research grant at Northwestern University Feinberg School of Medicine in the Department of Maternal Fetal Medicine.
The goal is to develop methods and programs to educate the widest possible demographic of women and families empowering their improved communication with the obstetric community. This is essential because up to 80% of maternal deaths are preventable. A large component of these are related to the failure of patients to recognize and report critical symptoms for the leading conditions adversely impacting maternal/fetal health.
An educated patient can become her own best first line of defense.
The Shane Foundation Maternal Fetal Medicine Fund was established at Feinberg to advance patient education on urgent maternal warning signs. With support from The Shane Foundation, Feinberg faculty-physicians are developing and testing a visual education tool to illustrate and improve recognition and reporting of peripartum and contraceptive-related blood clots. Initial testing of the tool with Northwestern’s patients is planned for the summer of 2024 while all images are being finalized, and the final visual education tool is in development for more widespread and universal implementation. It will enable women to recognize and report critical symptoms for the most severe conditions leading to maternal mortality and morbidity. With the help of The Shane Foundation, the tool will be more widely distributed upon completion.
The Shane Foundation takes immense pride in its support of Northwestern University Feinberg School of Medicine, a distinguished medical school and research institution that delivers exceptional obstetrics and gynecological care through Feinberg faculty and its clinical partner Northwestern Medicine. Northwestern Medicine’s Prentice Women’s Hospital is the largest birthing center in Illinois, with over 11,000 deliveries annually. Feinberg faculty members play a pivotal role in educating the next generation of OB/GYN leaders and conducting cutting-edge research to enhance women’s health and wellness. The Shane Foundation’s support, along with that of other donors, significantly contributes to these noble endeavors.
Pregnant people and families facing high-risk pregnancies trust Feinberg’s Maternal-Fetal Medicine (MFM) faculty specialists to care for and guide them through the unique challenges they face. In addition to clinical care, the Division of Maternal-Fetal Medicine at Feinberg is nationally recognized as a leader in research and education. Its scientists lead randomized clinical trials, observational studies, and patient-centered outcomes research to benefit pregnant people and their newborns in a wide variety of settings. Maternal-Fetal Medicine faculty investigators partner with others at Feinberg to study, among other areas, cardiovascular health in postpartum individuals, clinical care of families affected by HIV during pregnancy, pregestational diabetes, and pre-eclampsia. They work collaboratively with partners at Feinberg and Northwestern Medicine, as well as across the country, participating in collaborative groups and studies such as the National Institute of Child Health and Human Development-funded Maternal-Fetal Medicine Units (MFMU) Network, the nuMoM2b Hearth Health Study, and the Environmental Influences on Child Health Outcomes (ECHO) Program.
For more information about Northwestern’s OB/GYN Division of Maternal-Fetal Medicine, contact Mary Kreller at mary.kreller@northwestern.edu or 312-503-0742.
Congressional Support
The Shane Foundation continues our on-going support by functioning as a signatory on major bills of maternal healthcare Congressional legislation. This year featured efforts for the 2025 funding under Health and Human Services Appropriations bill, FY25 to address preventable US stillbirth rates.
Maternal and Child Health Stillbirth Prevention Act Update: On March 12, The Stillbirth Prevention Act passed with a bipartisan 25-0 roll call vote through the House Energy & Commerce subcommittee of Health markup hearing and a week later, on March 20, passed the full E&C Committee markup hearing with a bipartisan roll call vote of 44-0.
Next steps: We are anticipating that the bill will move to the full House floor for vote in the coming weeks! In the meantime, we must keep raising awareness and requesting support from lawmakers around the country. Please take action and ask others to reach out to their members in the U.S. House requesting support of the legislation.
SHINE for Autumn Act Update: On March 12, SHINE passed through the House Energy & Commerce subcommittee of Health markup hearing!