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Patient Advisory Council

Last Updated on Tuesday, October 07, 2014

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.

Each member of the Patient Advisory Council is a preeclampsia survivor or a family member of a woman who suffered death or disability such that she is unable to represent herself as the result of preeclampsia. The Patient Advisory Council is currently accepting applicants through July 1, 2015 via an online application, which will be reviewed by the PAC in the fall. Read the Press Release for more information.

Beth Frazer

Chair

Beth Frazer is the Vice Chair of the Preeclampsia Foundation Board of Directors and serves as the PAC board liaison and chair. In 2008, when Beth was only 20 weeks pregnant, she developed sudden onset HELLP Syndrome and severe preeclampsia, which resulted in the death of her twin son and daughter.  She immediately developed a passion for preeclampsia education and awareness, and began volunteering with the Preeclampsia Foundation.  Beth went on to have two healthy pregnancies. She lives in Nashville, TN, with her son and daughter, and husband, Bryan, with whom she coordinates the Nashville Promise Walk for Preeclampsia. She received a Juris Doctrate from the University of Louisville Brandeis School of Law and practiced as a civil litigator, representing clients in a variety of matters including employment disputes and civil rights claims.  She has served on the Patient Advisory Council since its creation in March 2014.

Norlisa Abrenica-Keffer

Member

Norlisa Abrenica-Keffer is a stay-at-home mom to her three children, boy/girl twins and their younger brother. In her twin pregnancy, Norlisa developed preeclampsia twice postpartum after delivering them at 38.4 weeks. She also developed preeclampsia with her singleton at 34 weeks resulting in delivery at 36 weeks, and had preeclampsia again one week postpartum. She credits much of her pregnancy success to the knowledge and vigilance of her perinatologist and nurses, and working with them and her husband as a team. She hopes to spread knowledge, awareness, and patient advocacy. Norlisa has also served on the Perinatal Advisory Council at the University of Washington Medical Center, and with other non-profits to help patients suffering from infertility and high-risk pregnancies. In a previous life before marriage and famiy, Norlisa was a biochemist with Bachelor of Science in Biochemistry from the University of Delaware, working in both research and private tutoring. She live in the Southwest with her husband, Gordon, three children, and two pugs. She has served on the Patient Advisory Council since November 2014.

Heather Alonge

Member

Heather Alonge was hospitalized with severe preeclampsia in 2013 when she was 28 weeks pregnant. One week later, Heather delivered her daughter after unsuccessful attempts at stabilizing her blood pressure and suffering a seizure. Today Heather is thankful her daughter is healthy and thriving and that her own health has returned to good condition. Heather currently serves on the Patient Advisory Council and wants to work with other champions, survivors and experts to improve outcomes and ultimately find a cure. She holds a PhD in health services with an emphasis in health management and policy and a masters in public health. Heather has spent the past ten years of her career researching health issues and currently works in academia teaching public health and health care administration courses. Heather's research interests and experiences include: telemedicine utilization, access to care and outcomes, ethical frameworks, program evaluation, qualitative analysis and rural health outreach.  She has served on the Patient Advisory Council since November 2014.

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Meghan JS Canedy

Member

Meghan JS Canedy became acquainted with the Preeclampsia Foundation during her first pregnancy, in which she delivered her daughter late preterm after struggling for ten weeks with preeclampsia and continuing to experience it in the postpartum period. She went on to develop gestational hypertension and postpartum preeclampsia with the delivery of her son during her second pregnancy. She resides in New England with her daughter, son and Active-Duty military husband. She earns her stress relief with distance running, biking and swimming. Meghan received her MSN from Yale School of Nursing and works as a Pediatric Nurse Practitioner in a Level 2 Special Care Nursery and Family Birthing Center.  She has served as a clinical adjunct instructor for Yale School of Nursing advanced practice nursing students, and also helps mothers and families achieve their breastfeeding goals as an IBCLC. She has served on the Patient Advisory Council since its creation in March 2014.

Claudia Chahin

Member

Claudia Chahin developed preeclampsia in her first pregnancy in 2009. After weeks of bed rest her son, James, was delivered at 35 weeks. In her second pregnancy in 2012, Claudia began having high blood pressure at 18 weeks and after medication and bed rest her daughter, Isabel, was delivered at 30 weeks. She continued to have high blood pressure for 8 months post partum. Claudia is thankful that she and her babies are healthy and is honored to have the opportunity to be more involved with the Preeclampsia Foundation to help bring awareness and education to other families as well as to support research of this condition. Claudia received a Juris Doctorate from The University of Texas School of Law and works as in-house counsel at a national non-profit organization that provides education, safe shelters and alternatives to incarceration for over 200,000 youth and their families annually.She lives in Austin, Texas and has served on the Patient Advisory Council since November 2014.

Fathiyyah Doster

Member

Fathiyyah Doster joined the Preeclampsia Foundation in 2010 after her near-death experience with preeclampsia in February 2010 with her, 37-week, first-born daughter. After a spike in her blood pressure, she suffered two seizures, shutting down her lungs, kidneys and liver. Alongside a four-month hospital stay, Fathiyyah experienced a tracheotomy, multiple surgeries and procedures and had to continue dialysis for one year. Her daughter was healthy. She has served as the South Florida Promise Walk coordinator since 2011. Fathiyyah is a mental health therapist who received her master’s in Mental Health Counseling from Springfield College in 2009. Fathiyyah has several years’ experience in the field of severe and persistent mental illness as well as substance abuse. She has served on the Patient Advisory Council since its creation in March 2014.

Carol Hamilton

Member

Carol Hamilton developed sudden severe preeclampsia at 24 weeks during her first pregnancy in 1998 and was forced to deliver. Her daughter, Mary, was stillborn. Her second pregnancy in 2000 resulted in a healthy daughter born at 36 weeks. Her third pregnancy in 2002 resulted in a son born at 37 weeks, after which Carol suffered post-partum preeclampsia. Carol has worked with the Preeclampsia Foundation in various capacities since 2002, including serving on the Board of Directors from 2004 – 2008. She received her Doctor of Pharmacy degree from University of Florida and worked as a clinical pharmacist prior to having her first child. She currently lives in Naples, FL with her husband Jim and two children, a son and daughter. She has served on the Patient Advisory Council since its creation in March 2014.

Ushma Patel

Member

Ushma Patel developed severe preeclampsia and partial HELLP syndrome in January 2014 at 36 weeks pregnant. She delivered her daughter soon thereafter, but suffered neurological complications from the high blood pressure. Ushma spent 8 days in the hospital and several weeks on medication to manage her blood pressue. In addition, her daughter was found to have a congenital heart defect at 2 months and underwent open heart surgery at 7 months. Both Ushma and her daughter are now healthy and excited to be back to a "normal" routine. Ushma is a health services researcher with experience in qualitative research, and training in cognitive interviewing and conducting focus groups. She has contributed to survey development, program implementation and evaluation, engaging consumers in safety and quality, and explaining evidence-based medicine to consumers and clinicians. She received a Masters of Science in Public Health from the University of North Carolina at Chapel Hill in Health Policy and Management. Given her career and experience, she developed a strong interest in representing the patient voice and raising awareness for preeclampsia. She lives right outside of Raleigh, NC with her daughter and husband. Ushma has served on the Patient Advisory Council since November 2014.

Stacey Porter

Member

Stacey Porter developed severe preeclampsia during her third pregnancy in 2012, with no prior indication of any issues in either of her first two full-term pregnancies. This resulted in the delivery of her daughter Delilah at 25 weeks and a month-long stay in the Neonatal Intensive Care Unit before losing her to a hospital-acquired bacterial infection. That experience led to the creation of her own non-profit, The Tangerine Owl Project, which is dedicated to supporting the emotional and financial needs of families with children who are in the Neonatal Intensive Care Unit. In life before the non-profit world, Stacey earned her Bachelor of Science degree in Human Development & Family Studies from the University of Illinois Urbana-Champaign, and worked in the hospitality industry in addition to running her own wedding & event planning business for nearly a decade. She now lives with her family in Evanston, Illinois and has focused her heart and soul in efforts centered around the world of NICUs, traumatic birth, bereavement support, all things that she has experienced first hand. Stacey is honored to be volunteering with the Preeclampsia Foundation to help spread awareness of this condition, to support their efforts in continuing research of it and bringing others together by providing information and support that may just save someone’s life. Stacey has served on the Patient Advisory Council since November 2014.

Joy Victory

Member

Joy Victory developed severe preeclampsia and partial HELLP syndrome in 2013 late in her pregnancy, but her symptoms were disregarded and treatment was delayed. Her newborn daughter required immediate NICU care after being born in respiratory distress with suspected meconium aspiration syndrome. Joy’s highly chaotic and poorly managed hospital care was nearly as life-threatening as her disease. As a result, she became motivated to help women and families grappling with pregnancy complications in a broken healthcare system. She is a digital content editor specializing in environmental and science issues. She currently works in marketing and communications for the non-profit Environmental Defense Fund. She lives in Queens, N.Y., with her husband, Brendan, and daughter, who is now a spry, gregarious toddler. Joy has served on the Patient Advisory Council since November 2014.

Laney Poye

Staff Liaison

Laney Poye, Director of Community Relations, serves as the Patient Advisory Council's Staff Liaison. Laney currently manages the organization’s volunteer leaders and community partners in development, patient support and communications, and leads the national team for the Foundation's signature awareness event, The Promise Walk for Preeclampsia.

Laney received her Master’s degree in International Affairs from Florida State University. Her studies focused primarily on global issues of women’s health and welfare, with an emphasis on determining sustainable change for women in low-resource settings.  She has spent many years volunteering for health causes and is an enthusiastic supporter of increasing awareness and advancing medical understanding of this devastating pregnancy condition.

 

 

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