Mission: OUR MISSION is to initiate research, raise public awareness and provide support for those whose lives have been affected by the often fatal and poorly understood maternal health complication known as amniotic fluid embolism.
Results: In August 2013, The Foundation launched the only global patient registry in collaboration with its partners at Baylor College of Medicine in Houston, Texas. The registry will allow for greater visibility into incidence rates, survival rates and commonalities amongst those affected. It will also provide a comprehensive database to be used as the basis for further clinical research on AFE. Since AFE is a rare occurrence each case holds crucial information. The registry has already exceeded the total amount of cases ever studied.
Direct beneficiaries per year: We've helped over 200 families find the information, resources and support they need when faced with the birth complication, amniotic fluid embolism.
Geographic areas served: International
Programs: The afe foundation is the only organization dedicated to afe and seeking a way to prevent the 2nd leading cause of maternal death and suffering in the u. S. The afe foundation was proud to continue the ground breaking research being performed at baylor college of medicine (bcm) in houston tx. The afe foundation patient registry allows researchers greater insight into individual cases of amniotic fluid embolisms as well as examine commonalities among those affected. In 2014, 87 patients were enrolled into the study making it the largest, most comprehensive database of afe cases compiled in the world. Funds support the salaries of the research medical and administrative team, database maintenance, and the cost of the medical records to be sent to the college. Additionally, over 1,500 clinicians received advanced educational information to better help them prepare for this unpreventable and unexpected birth complication. Our outreach has resulted in over 40,000 visits to the afe foundation website to better learn more about the condition and connect to valuable resources, guides and connect to others affected.
In a time when our culture is so knowledgeable about medicine, it is tragic that we are losing mothers and/or babies during childbirth. Before our own next door neighbor experienced her AFE, we had never heard of this, had never known anyone else who had suffered from it. We are so grateful she was surrounded by an excellent team of physicians, nurses, and technicians, and that she and her precious son survived. Though she has had years of dealing with the sequelae of her experience, she was greatly motivated to reach out to others who had similar experiences or who had lost a loved one due to AFE. To read the stories of these mothers or grieving family members is so heart wrenching. For fathers to be left alone to raise their children, to have the mother survive but suffer months or years of physical difficulties and neurological damage, or to lose your daughter or sister is life shattering. It is clear that this support network has already been of great help to so many; the fund-raising events; the forums that bring people together to share their experiences, to be comforted and grow in strength and knowledge; all of these efforts mean so much to the victims and their families. In addition, the organization is reaching out to the medical community to coordinate research and develop greater understanding as to why this happens and how to prevent it in the future, to save lives, save families. We are so grateful our neighbor and her son survived. We are hoping that the knowledge gained and discoveries revealed through the efforts of this organization will help to prevent this tragedy from happening and strengthen the families who have suffered.