Saturday, September 20, 2008
Minneapolis, Minn - Leslie Weeks, Preeclampsia Board Chair and Steve and Jennifer Bohach, co-founders of the HELLP Syndrome Society tonight announced the two organizations have agreed to a merger that will formally take effect on January 1, 2009.
The HELLP Syndrome Society was one of the first patient based hypertensive pregnancy organizations in the world. They were also one of the first organizations of its type to use the power of the internet to reach out to women affected by HELLP Syndrome by establishing a web site and an online research Questionnaire. In so doing, the Society amassed one of the largest and most extensive data bases of HELLP Syndrome survivors in the world. Over the last decade, Steve and Jennifer have been instrumental in using their vast and detailed database of patients to assist the research efforts of several physicians. Steve Bohach noted, "We lost our baby, Taylor, to HELLP Syndrome and I almost lost my wife." As a result of their experience, they created the HELLP Syndrome Society as a way to offer information and support to others affected by this seriously dangerous variant of preeclampsia. Bohach continued, "Jennifer and I knew we had to do something to try and prevent other families from experiencing the tragedy we went through."
J. Thomas Viall, Executive Director of the Preeclampsia Foundation said that "while the HELLP group will come under the Preeclampsia umbrella, we will be certain to continue Steve and Jennifer's good work and provide critically important information to this significant subset of preeclampsia patients." He continued, "Given the current economic climate and the stress it places on nonprofit organizations, this merger also makes good business sense."
The Preeclampsia Foundation is a U.S.-based 501(c)(3) non-profit organization established in the year 2000 to fund and drive research, raise public and professional awareness, and provide support and education for those whose lives have been touched by preeclampsia and other hypertensive disorders of pregnancy. Its mission is to stop preventable death and disability of mothers and babies by eliminating delays in diagnosis, implementing the best known practices, developing new practices, and helping women and their families through the impact of preeclampsia. The Preeclampsia Foundation is funding four research projects this year through its Vision Grant Program and operates an on-line Forum that serves the needs of thousands of visitors every month. Leslie Weeks, Chair of the Preeclampsia Board said, "I too am a preeclampsia survivor and I also lost a baby. The sad thing is that our stories are more common than many people realize. That's why I am so pleased that our two organizations are joining in common purpose. Together, we can build on each other’s resources to reach more, teach more, and do more."
About HELLP Syndrome: It is a unique variant of preeclampsia and was named by Louis Weinstein in 1982 after its characteristics (Hemolysis - Elevated Liver Enzymes – Low Platelets). It can be fatal to both the mother and the baby. HELLP Syndrome occurs in tandem with preeclampsia, but because HELLP Syndrome's symptoms may happen before preeclampsia's three findings (high blood pressure, protein in the urine, and swelling), they may be misdiagnosed as symptoms of gastritis, disseminated intravascular coagulation (DIC), acute hepatitis, gall bladder disease, and other conditions. As a result, the mother may not get the right treatment, leaving both mother and baby that much more at risk.