The Patient Advisory Council (“PAC”) serves as an advisory resource to the Board of Directors and staff of the Preeclampsia Foundation, for the purpose of maintaining and furthering the Foundation’s position as a patient-centered, patient-driven, patient advocacy organization. The patient voice and experience are integral to the mission of the Foundation; therefore, the PAC operates to directly engage patients, the Board, and staff, in meaningful, ongoing communication, and keep the patient at the forefront of all we do.
Alexandra De Leon developed HELLP syndrome in 2013 at 24 weeks of pregnancy. She began developing HELLP at a rapid pace, which required an emergency cesarean. Her beautiful baby, Gabriella, unfortunately did not make it. The Preeclampsia Foundation was a huge support for Alexandra because she was able to understand what had happened with her body and all of the signs that were missed. Today, Alexandra and her husband Joshua have two beautiful children, Josiah and Jazmin. Alexandra keeps Gabby’s memory alive by serving as the Promise Walk Chair in the Bay Area, CA. She is committed to bringing awareness to HELLP syndrome/preeclampsia and other hypertensive disorders of pregnancy. She hopes that one day all medical providers will be educated on HELLP syndrome/preeclampsia and can provide the adequate care for women, so no mother will ever experience a loss of a child. She recently joined the Patient Advisory Council in August 2018 and was voted to become Chair in 2020.
Jennifer was diagnosed with postpartum preeclampsia and HELLP syndrome in 2015. One week after having her daughter, she was re-hospitalized due to the diagnoses and spent a week in the hospital fighting to make sure that she would be here for her newborn daughter and husband. Jennifer had all the classic signs of preeclampsia before birth, but feels that these symptoms were overlooked, until Jennifer advocated for herself, and her doctors finally investigated it.
In 2016, Jennifer attended the first Patient Advocate training held by the Preeclampsia Foundation in Orlando, Florida. Jennifer learned the skills needed to be a patient advocate and tell her story to others. Since attending the training, Jennifer has worked with Baby Cafes in Buffalo, NY to work with expecting and new mothers to help them identify any signs and symptoms of hypertensive emergencies in pregnancy or the postpartum period.
In 2018, Jennifer attended the HAPPEN workshop held by the Radcliffe Institute at Harvard in Boston, MA. Jennifer met with survivors and practitioners to discuss heart health and what happens after preeclampsia. Jennifer was a co-author of a published white paper discussing what the HAPPEN workshop was, the outcomes, and what practitioners providing services to women who had a hypertensive emergency in pregnancy need to know and look for.
Jennifer has a master’s degree in Counseling and is about to become a Certified Paralegal. She currently works in the Juvenile Justice system, specifically in the family courts. She also is a leader in her Union, being a member of the Executive Board. Jennifer enjoys spending time with her family, which includes her daughter, husband, and 4 fur babies! Jennifer volunteers for an animal rescue and fosters puppies until they can find their forever home. Jennifer also strives to make sure that women and their families know about the symptoms of hypertensive emergencies, as well as advocating for women’s health after preeclampsia.
Jennifer Voelker has been a member of the Preeclampsia Foundation Patient Advisory Board since September 2021.
Leah Bahrencu is HELLP syndrome and preeclampsia survivor following the 34-week birth of her twins in January 2017. Leah experienced multiple organ failure, DIC, sepsis, and now has life-long pancreatic insufficiency following her traumatic pregnancy experience. She has undergone five surgeries and three full months of hospitalization.
Leah wanted to ensure other women were educated through her experience, so she shared her story with National Public Radio (NPR.org), provided investigative reporting in her hometown of Austin, Texas, and has been involved with the MoMMA's Voices coalition to share her experience. She has served on research panels, provided the patient perspective on the Texas Collaborative for Healthy Mothers and Babies (the Texas state perinatal quality collaborative), and served on the national Maternal Early Warning Signs (MEWS) coalition for the Council on Patient Safety. As a Preeclampsia Foundation volunteer, she has also helped to organize her local Promise Walk for Preeclampsia and been active at sharing her story with local publications to raise awareness and research funds.
After suffering from this traumatic birth and overcoming HELLP syndrome, Leah is passionate to empower women to find and use their voice to create changes in maternal health care. She is honored to serve on the Preeclampsia Foundation Patient Advisory Council to help other moms know the signs and symptoms of preeclampsia and to empower them to speak out to their health care providers when they feel something is not right.
Leah and her twins live in Austin, Texas, where she works as a fitness instructor and nutritionist. She joined the Patient Advisory Council in March 2021.
Danielle Hallinan experienced HELLP syndrome in 2009 at 24 weeks of pregnancy with her first daughter, Grace. Grace was born via emergency c-section and only survived 3 days due to her extreme prematurity. Danielle then went on to also experience postpartum preeclampsia after Grace's passing.
In 2011, Danielle developed rapid severe preeclampsia at 34 weeks pregnant, requiring her daughter Annelise to be delivered early. Thankfully, Danielle and Annelise recovered safely. Annelise was joined by her brother, William, in 2014 after a healthy 37-week pregnancy.
After suffering from these traumatic birth experiences, Danielle has worked to spread awareness of HELLP syndrome and preeclampsia. She has been a member of the volunteer committee for the Philadelphia/South Jersey Promise Walk for Preeclampsia for 8 years, helping to make the event a success in her local community, and spreading awareness and fundraising for the Foundation. She served as the Mission Mom for the Philadelphia/South Jersey Promise Walk in 2013, sharing her story with local publications to raise awareness. She is passionate about empowering women to know the signs and symptoms and to speak out about any and all health concerns.
Danielle is honored to serve on the Preeclampsia Foundation Patient Advisory Council to help other moms. Danielle lives with her husband and two children in Southern New Jersey where she works as a high school mathematics teacher. She joined the Patient Advisory Council in May 2021.
Tashae Lawrence is glad to have this opportunity to be on the Patient Advisory Council. A preeclampsia and HELLP syndrome survivor with her first daughter at 31 weeks, she learned about the Preeclampsia Foundation while volunteering during the Promise Walk in Georgia. She had no idea of what the two conditions were at the time and because of that, she wants to help bring awareness to women so that they know what they are through her service on the PAC.
She is a mother of two sweet girls, Ava (11) and Rue (2), and resides in Decatur, Georgia, where she is currently in school for Sonography/Radiology. Tashae joined the Patient Advisory Council in March 2021.
As a preeclampsia survivor, Katie Lemire feel very honored to have been selected to serve on this council. In 2018, at 33 weeks pregnant, she developed severe preeclampsia and was rushed by ambulance to a nearby tertiary hospital where her son was delivered by emergency c-section. Her hypertension had led to the development of pulmonary edema (severe swelling in the lungs), which led to respiratory failure requiring intubation. She spent the first day of her son's life on a ventilator in the ICU. Prior to that experience, she had not learned much about preeclampsia: she certainly didn’t realize it was something that could be so dangerous for mother and baby. In less than 12 hours, Katie went from being at home not feeling that great to fighting for her life and that of her unborn child. Her son, who is now thankfully a healthy, rambunctious three-year-old, had a 34-day stay in the NICU. (Read her full story.)
Katie also represents the many women in the preeclampsia patient community for whom postpartum post-traumatic stress disorder (PTSD) was a very real consequence. Following delivery and her return home from the ICU, she began to have terrible flashbacks of the moments leading up to delivery and feeling unable to breathe. After reviewing the research (including through organizations like the Preeclampsia Foundation), Katie chose a specialized therapy called "eye movement desensitization and reprocessing," or EMDR. Though EMDR is an intense therapy, it allowed her to process the trauma and the emotions for what happened to decrease the symptoms of her PTSD.
She is grateful for the medical and psychological support she received, so as a member of the Preeclampsia Foundation Patient Advisory Council, her purpose is to advocate for the women, babies and families, who are unable to do so for themselves. Her hope is that continued research helps find a cure so that other women do not have to fight this disease.
Katie currently lives in northwest Boston with her husband and two sons, where she also serves as joint chair for the Boston Promise Walk for Preeclampsia. She holds a Master's of Education in School Counseling and hopes to one day volunteer in an antepartum floor to provide emotional support to expectant moms. She joined the Patient Advisory Council in March 2021.
Jasmine Mago struggled with infertility for years before becoming pregnant in 2010. She experienced a normal pregnancy through her first trimester and most of her second, before developing symptoms of preeclampsia around 26 weeks. As the only option for survival, Jasmine’s son was born via cesarean section weighing two pounds at 28 weeks and 2 days gestation. Today, Jasmine’s son is healthy, but the days, months, and years following his birth took a toll on Jasmine and her husband, as they dealt with the developmental delays and challenges typical of premature birth. Jasmine knows first-hand the limited awareness and understanding of preeclampsia by many pregnant women, the confusion and fear that accompany diagnosis, and the long-term impacts of the disease on women and their infants.
Jasmine leverages her experience by serving as a mentor to women who have suffered from preeclampsia. She also serves as an advocate by raising awareness and education on preeclampsia by regularly participating in the Chicago Promise Walk, and has shared her experience in live interviews on 20 radio stations across the country.
Today, Jasmine is a Senior Manager at Deloitte, an accounting firm and lives in the Chicago area with her husband and two sons. She joined the Patient Advisory Council in December 2017.
Kristian experienced mild preeclampsia in her first pregnancy in 2004 and developed severe preeclampsia, HELLP syndrome and thrombotic thrombocytopenic purpura (TTP) with her second pregnancy in 2010 at around 23 weeks gestation. Kristian’s inpatient hospital course spanned 30 days including several days in the ICU, multiple plasmapheresis treatments, countless medications and physical therapy. The most lasting memory of her hospital experience was the unfortunate loss of baby Jacob. Kristian and her husband, Baron, subsequently had two successful pregnancies. The family keeps Jacob’s memory alive by participating in community grief support initiatives and sharing their faith walk.
Kristian holds a Bachelor in Nursing Science, a Master in Business Administration and a Master in Health Systems Management. She works in the field of Quality, Patient Safety and Risk Management.. Kristian and her husband live in California and have three beautiful children, Jasmin, Isabela, and Samuel. Kristian is excited about the opportunity to become directly involved with the Preeclampsia Foundation and support the efforts to help bring awareness and education to women and their families. She has served on the Patient Advisory Council since Spring 2021.
Mavis Stephens is an Army veteran who served at Walter Reed during the Gulf War, and received an honorable discharge. After active duty, she served in the Army reserves for a short time and started her federal government civil service career. She's worked for the federal government for 30 years in the areas of patient care coordination, medical administration, program & project management, policy/issues manager, and currently as a public health analyst. Though originally from Georgia, she has live in the DC/MD metro area for over 20 years. Mavis is passionate about serving the Preeclampsia Foundation as she's suffered with severe preeclampsia with all 3 of her pregnancies; 2 resulting in infant loss. She's the proud mother of her young adult son who lives on his on in Atlanta. Her son suffered from a left arm brachial plexus injury sustained during delivery which resulted in six surgeries and very intense follow-ups. (Read her story in the NIH website.)
Mavis is currently working on certifications in Grief & Loss Counseling and Organizational Management. She's a member of the International Association of Administrative Professionals and The American Association of Christian Counselors. In her spare time she enjoys volunteering throughout the community, serving at church, reading, and adult coloring. She has served on the Patient Advisory Council since December 2019.
In 2016, when she was just shy of 31 weeks pregnant and after expressing many concerns, Stephanie was diagnosed with missed preeclampsia. Expressing her concern, her OBGYN referred her to a Maternal Fetal Medicine specialist as a peace of mind visit, that quickly turned into an action plan to save the lives of her and her unborn daughter. From her second trimester until her daughter’s birth, she was dismissed as having “normal” symptoms of pregnancy, i.e., hyperemesis, headaches, elevated blood pressures, extreme swelling, and later visual disturbances). She owes her life to the MFM who diagnosed the preeclampsia and admitted her for a scheduled cesarean section that week after discovering dangerously low fluid levels of her baby. Her daughter was born premature at 31 weeks 3 days and spent 4 weeks in the NICU. Stephanie was sent home a few days after the birth and was sent home from two Emergency Rooms with all of the classic symptoms of post-partum preeclampsia and HELLP syndrome. After begging to be readmitted to hospital almost a week after the birth, the Hospitalist diagnosed her with HELLP syndrome, and she fought for her life in the ICU.
This was an extremely overwhelming time for Stephanie as a new mom, being separated from her daughter by two floors until she was well enough to visit the NICU. It is important for her to support families who are going through similar situations, not only for the physical, but mental toll that comes with this disorder. Her goal is to sit beside you, listen, and be your advocate.
Stephanie immediately joined social media groups such as the Preeclampsia Foundation, HELLP Syndrome Survivors, and Near Miss Survivors to find others like her who had battled post-partum HELLP, and were not being heard. She attended her first Preeclampsia Foundation Summit in 2018 in Chicago IL, and this fueled her fire for change. From that day forward, she set her passion and purpose at the forefront. As a maternal health ambassador, Stephanie works closely with many organizations such as Mom Congress, 2020 Mom, MoMMA’s Voices, and the Preeclampsia Foundation, using her story to help others in realizing they are not alone, and that we have the ability to move mountains when we work together. She has passed legislation at both the state and federal levels and continues to join fellow ambassadors annually at Congress. Joining forces with the Preeclampsia Foundation, Stephanie has been invited to speak at the Indianapolis Promise walk, and the honor to speak alongside CEO Elenis Tsigas at the Indiana AWHONN meeting in 2019. She leads a team annually at the Chicago March of Dimes in her preemie daughters name, and supports Northwest Indiana hospitals with awareness and education, representing the patient perspective.
Stephanie sits on the Indiana Perinatal Quality Improvement Collaborative (IPQIC) and is a co-author of the new hypertensive toolkit. She works closely with the Indiana State Department of Health, their Commissioner, and Governor on new initiatives such as the OB Navigator Program in efforts to lower the states maternal mortality and morbidity rates. Although she survived and is called a near miss, she knows that our stories do not end there, that the cure is not birth, and that we have so much work to do in maternal health. Maternal mental health as well as physical health go hand in hand, and with the help of the Preeclampsia Foundation and their initiatives, she strongly believes we can make a better future for mothers and babies. Her daughter is now a happy, healthy, and thriving 4-year-old, yet Stephanie still suffers from long term complications. Her work is not only therapeutic but brings a purpose and passion to her life that she has never known.
Stephanie has a master’s degree in Business Administration and is currently working towards a Doctorate in Business Administration from DePaul University in Chicago, Illinois. She works as an Associate Professor at Ivy Tech Valparaiso and is extremely involved in her community. Stephanie has been awarded 20 under 40 in Business of Northwest Indiana and has been nominated for Up and Coming Influential Woman of the Year for the not-for-profit sector of NWIIWA. She is currently working on her first book. Stephanie has served on the Patient Advisory Council since March 2021.