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Nonprofit Overview

Causes: Health, Specifically Named Diseases

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.

Community Stories

9 Stories from Volunteers, Donors & Supporters

1

Client Served

Rating: 5

On August 27, 2012, my best friend, Paula suffered an AFE and was unable to recover and passed away. Devastation can not begin to describe how I felt. Through a friend, I was put in touch with the AFE Foundation. Miranda, the founder, personally reached out to me. I don't remember most of the conversation, but I remember knowing how nice it was to talk to someone who could understand my confusion and loss. Miranda called and texted often, sending me resources, recommending books and being a shoulder to cry on over the phone. I learned about the AFE Foundation and their goals and I knew I wanted to be part of it. Three of us decided to hold a 5K in Paula's hometown in her honor to raise awareness and money for the AFE Foundation. We have raised almost $40,000 in the 5 years we have held the 5K. The Foundation is doing incredible work to help end this horrible and often fatal complication of pregnancy. I miss Paula everyday, I miss that smile, but knowing that I am part of the solution offers some peace. I don't know where I would be without the support of the AFE Foundation.

1 bdenger

Client Served

Rating: 5

I had an amniotic fluid embolism (AFE) 1.5 years ago. I had a placental abruption at 29 weeks and my son was born via c-section. Everything seemed to go well until a few hours later when I crashed. I was out into a medicated coma for 4 days whiile they tried to stop the bleeding. In all, I was given 58 units of blood.
About a month ago, I was really struggling with my upcoming tubal ligation and started researching AFE again. I had read about the foundation before but this time noticed they had a Facebook group for survivors. Between that group and speaking to the founder of the foundation, I have had a lot of healing through sharing my story and hearing the stories of others who understand how traumatic it was to go through an AFE. I also found their registry for women to share their medical information for further research. It was then that I realized the procedure that was done to save my life was likely written about by the doctor who are working closely with the foundation. And I'm so excited to submit my medical records and be a part of research that will hopefully help doctors save even more women's lives. At a 40% survival rate, I'm blessed to be alive and obviously want more women to survive as well. This foundation is doing great work!!

1

Client Served

Rating: 5

The AFE Foundation was really helpful generous and supportive since our family has suffered watching my sister in law who is still in a coma for almost a year and half. Me and my family didnt know what was going on and what was gonna to happen. My husband found this organization and contacted Miranda to get some information about AFE. She and this organization were so helpful emotionally and we never could have asked for everything they did for us. didnt expect them to support us. Our family is so appreciative of the AFE foundation and Miranda even my sister in law will be thankful for this organization's support for her son. I will pray until we can find a way to stop this terrible disease. I hope there will be no more moms who will suffer from an AFE. My family believes the AFE foundation's effort and care will make it happen.

1

General Member of the Public

Rating: 5

I found AFE Foundation through my AFE experience. Glad to know we may have answers and solutions one day.

1

Client Served

Rating: 5

The AFE Foundation has helped me by communicating with other moms and we all have experienced the same medical emergency. When someone posts her story we understand because we have been through it. We can help others by sharing. I am not alone. Other moms are not alone. I appreciate the AFE Foundation!! My AFE happened in March 2008 in Jackson, Tennessee. We need research in AFE and studies. We need to understand AFE more!!

1

Client Served

Rating: 5

The AFE foundation has continuously given me support since my AFE.

1

Client Served

Rating: 5

A wonderful organization promoting the health and well-being of mothers and children who have experienced AFE. They are also a great advocate for survivors, widowers, and children of AFE victims.

General Member of the Public

Rating: 5

SISTER IN LAW HAS 5 CHILDREN, GIVING BIRTH FRIDAY IN MINOT ND 3/3/17 SUFFERES THIS. SHES FIGHTING FOR HER LIFE RIGHT NOW. PRAY EVERYDAY HER KIDS NEED HER

2

Donor

Rating: 5

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.