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Preeclampsia Foundation

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Nonprofit Overview

Causes: Health, Medical Research, Public Health

Mission: The Preeclampsia Foundation reduces maternal and infant illness and death due to preeclampsia, HELLP syndrome, and other hypertensive disorders of pregnancy by providing patient support and education, raising public awareness, catalyzing research and improving healthcare practices. We envision a world where preeclampsia no longer threatens the lives of mothers and babies.

Results: 700 active volunteers trained in awareness-raising, patient support and education, including online forum moderators http://www.preeclampsia.org/forum/ 2,250 stories shared by survivors and/or their family members 38 cities hosting the Promise Walk for Preeclampsia across the US in 2014 http://www.promisewalk.org/ 5,000 new visitors to our website every day 140,000 patient education brochures and materials distributed to clinics, health centers, and provider offices 500 health care providers educated through in-person and online CME/CEU courses and symposia over the past three years $550,000 in research funding awarded to date 5,000 participants recruited for research studies http://www.preeclampsiaregistry.org/

Target demographics: reduce maternal and infant illness and death due to preeclampsia, HELLP syndrome, and other hypertensive disorders of pregnancy by providing patient support and education, raising public awareness, catalyzing research and improving healthcare practices.

Geographic areas served: Globally

Programs: Educate, support and empower women – and their friends and loved ones - on the warning signs, long term consequences and medical understanding of preeclampsia, including their need to get timely, appropriate care. Increase public awareness of preeclampsia, including raising global attention on this devastating maternal-fetal health issue. Enable professional training, resources and research to improve the clinical practices of health care providers. Fund and advocate for research and improved policies to meet critical gaps in scientific knowledge and inspire new thinking.

Community Stories

18 Stories from Volunteers, Donors & Supporters

Kristen88

Volunteer

Rating: 5

I first learned about The Preeclampsia Foundation because I was looking for some support postpartum after I suffered through Preeclampsia. I had my daughter at 34 weeks because of it, and she was in the Special Care Nursery for 24 days. The Foundation is fundamental in helping find a cure for preeclampsia and other hypertensive pregnancy disorders. I had volunteered in 2016, and now I am a co-coordinator for one of the Promise Walks!

Review from Guidestar

Leila T.

General Member of the Public

Rating: 5

I was diagnosed with Preeclampsia in 2012. I had briefly heard of the word as a Dietitic student and did not know anyone who have had it. Suddenly, laying in that hospital bed, I was googling like crazy and came across the Preeclampsia Foundation. I joined the forum, read through conversations, and entered my worries for others to see. My daughter came in at 3 pounds 4 ozs at 31 weeks, and spent 6 weeks in the NICU. The moments away from her, I kept coming back to the site, kept reading, and researching; anything that would help me figure out what happened, why, and how it could be preventable. In 2016, I gave birth to another premature baby - a son, who was born at 34 weeks, and weighed in at 5 pounds, 4 ozs. I wasn't as afraid with the diagnosis this time around. Over the years, I somehow found myself in the center of all these stories from women who had preeclampsia. The first place I always tell them to look at is the Preeclampsia foundation site. They do so much with spreading awareness, keeping those of us who want to know in the loop about new research findings, clinic trials, etc. One day, we'll get to a place where Preeclampsia can be prevented and treated. I'm just so grateful that there are lovely people out there that share their stories, so I don't have to feel alone in mine! Thank you, for all that you do!

Review from Guidestar

Board Member

Rating: 5

After my son died due to an overlooked preeclampsia, they answered all my questions marks I had about his dead. What doctors were not telling me to cover their negligence .

Review from Guidestar

1 Joy V.

Volunteer

Rating: 5

I first encountered the Preeclampsia Foundation a few weeks after delivering my baby girl in 2013. I had undiagnosed severe preeclampsia and went through hell at the hospital. The web site was terrific and informative. And on Facebook, I noticed how communicative the foundation was with women--I'd ask a question and within minutes it would be answered by a real person.

Months later, I decided to apply for a spot on their volunteer patient advisory council. We help the foundation keep its focus on being patient-centered, and they frequently ask us to evaluate information for them to make sure it's keeping in line with what real women encounter when enduring preeclampsia.

What has impressed me most about the Foundation is how they do SO MUCH with a tiny staff. I've worked for a large non-profit (500+ staff) and the Foundation feels as equally productive, with a staff numbering I believe around just 10 people.

Preeclampsia can be a devastating disease--for both mom and baby--and healthcare providers don't always respond with prompt, accurate treatment. The Foundation is a beacon for helping us get better maternal care, and keeping us informed.

Review from Guidestar

1 Rachel200

Volunteer

Rating: 5

Research and funding is important for this foundation. I'm a survivor of preeclampsia but my baby girl wasn't. Knowledge is key. If more awareness was made available to me my story with preeclampsia would be so different. Help others improve their story. Preeclampsia shouldn't kill .... meet my daughter Courtney a victim of my illness

Review from Guidestar

1 Wendy L.

Client Served

Rating: 5

The Preecclampsia Foundation has been a most valuable and trusted resource for me since April 2008 when I suffered and thankfully survived a severe bought of post partum eclampsia. Six days after my twin boys were born, I was back in the hospital, suffering a seizure and many of the other effects of this horrible condition. In the months follwing my release from the hospital, I struggled physically and emotionally with the lingering effects and looked to the Foundation for support, guideance and understanding. The honest information, helpful volunteers, and sense of community that the Pre-eclampsia Foundation have provided have helped me and many others more than words can express. The Foundation has also been an incredible resource for my husband by giving him a unqiue perspective on what I was feeling and going through. I look to the foundation for support with ongoing physical issues I still experience. It is also the first place I direct people to when they want to learn more about this serious and often fatal condition, which takes away too many moms and babies away from their families.

1 kallynsmom

Volunteer

Rating: 5

I found the Preeclampsia Foundation in 2008 after my daughter was born 7 weeks early because of Preeclampsia with HELLP. The foundation gave a answers to what happened to not only myself but my daughter as well. I felt that there were people out there that knew how I felt and could help me turn this negative into a positive. I now am holding my 3rd Promise Walk for Preeclampsia this year. I have made the Preeclampsia Foundation a part of my family, and I try to spread there information everyday in the hopes that I will save lives!

Jenette Z.

Volunteer

Rating: 5

When I lost my son due to Preeclampsia, I went out to look for resources on how this could happen. After a month or two I found Preeclampsia Foundation. They helped me understand the disorder and grieve for my son in the forums. I dedicate my time now in helping raise awareness. I also hold an annual fundraiser and give the proceeds to the foundation.

Rebecca C.

General Member of the Public

Rating: 5

I found the PF after my experience with pre-eclampsia and HELLP Syndrome in 2006. It is an absolutely great place to gain, and give, support to those affected by these complications of pregnancy. It is truly a second family.

Donor

Rating: 5

The Preeclampsia Foundation has been an invaluable resource for me in finding the research and emotional support I needed to become better able to tell my story as a survivor of preeclampsia and HELLP Syndrome. I've been involved with the Foundation several years with 2009 and 2010 being my most active yet.

In addition to being a donor, I also volunteer my professional expertise as a newsletter beat editor and providing guidance on matters related to fundraising.

The webiste has proved invaluable in creating linkages between survivors, letting them know that while each story is unique that they are not alone.

Nicole P.

Volunteer

Rating: 5

I found the Preeclampsia Foundation within months of loosing my son to severe Preeclampsia and HELLP. Since finding them, I have volunteered in many different capacities. My heart goes out to other families that have suffered a loss similar to mine. However, I know there are worse stories than losing your child and almost your own life. There are families out there that lose a mom and sometimes both. Those families and the memory of my son keep me volunteering. Until we find a cause and a cure for this tragic disease, I will continue to do whatever I can to help other avoid my loss and pain. I will never give up on my son, his memory or beating Preeclampsia. I have met people I would have never met and they have healed me to the depths of my soul. We have worked hand and hand to raise funds and awareness. And we won't give up.

Jennifer C.

Volunteer

Rating: 5

I had heard of preeclampsia prior to October 2006, but I had no real sense of what it was or what it could do. I learned about it the hard way in the 32nd week of my second pregnancy when undiagnosed preeclampsia became eclampsia and HELLP syndrome. My son was eight weeks premature and spent 28 days in the NICU. I spent 6 days in the ICU. The experience left me with many questions about what had happened and how it could have been prevented. As I began to research, I came across the Preeclampsia Foundation. Here I found not only answers but also a whole community of people who were willing to share their own experiences. For the past year, I have volunteered for the Preeclampsia Foundation and I am looking forward to becoming more involved.

8

Volunteer

Rating: 5

After developing HELLP Syndrome at 34 weeks with my first baby, I went looking for answers. And I found the Preeclampsia Foundation. That was in 2003, and today I remain committed to the only organization in the US that is strictly focused on preeclampsia. I was able to seek support from others and know that I was not alone. I was able to have some questions answered and through other's experiences learn more about preeclampsia and what I should ask or consider for another pregnancy. I am not sure how I would have made it through my second pregnancy without the support I receieved from other members of the Preeclampsia Foundation. They helped me in ways that not even my family could assist in. To have positive stories and encouragement that I could indeed get through the pregnancy, it was priceless.

Review from Guidestar

7

Volunteer

Rating: 5

In 2007, we lost our twin baby girls due to preeclampsia and HELLP Syndrome. I was 24 weeks pregnant when I became suddenly very sick. Fortunately, I made it through, but our daughters were just too little and lived only an hour after birth. After that loss, I spent so many hours on the internet searching for answers. What happened? Why? How could I make sure it didn't happen again? I found the Preeclampsia Foundation and found information and amazing support. Other women who were going through or had gone through what I was in the middle of. It was an enormous comfort. Today I volunteer with them coordinating the Irvine, CA Promise Walk for Preeclampsia and the Orange County Group for the Preeclampsia Foundation. We are trying to raise awareness, support other survivors and victims' families as well as generate research funds because currently there is no cure except delivery and that's just completely unacceptable. It may have given me a chance, but delivery was a death sentence for my daughters.

Review from Guidestar

8

Volunteer

Rating: 5

I have been volunteering for the Preeclampsia Foundation for the past year. It is a very personal journey, as my husband and I lost our son, who had to be born at 22 weeks because I had severe preeclampsia. Volunteering for this organization has been a wonderful experience. Every person that I have met through this foundation has been professional, compassionate and willing to do what it takes to find a cure. As a survivor I have comfort volunteering with the Preeclampsia Foundation and would suggest to anyone who has had this horrible disease that learning about the foundation will help with the healing.

Review from Guidestar

7

Volunteer

Rating: 4

Four years ago I was on a mission to find answers as to why I suffered code blue eclamptic seizures at the hands of my OBGYN, and found The Preeclampsia Foundation in my search. I had undiagnosed preeclampsia and almost lost my life as well as my son's life, because my doctor was not knowledgeable about preeclampsia, therefore I was not aware of the signs and symptoms. The Foundation told me all the things my doctor didn't and allowed me to understand what happened during my pregnancy. Part of my healing process, mentally, has been to give back to the preeclampsia community. I have found a purpose and a place to support those who have suffered and to make a difference by spreading awareness. I do this through volunteering in my local community as well as nationally through the annual Promise Walks for Preeclampsia held around the country. A million what ifs run through my head when I wonder ‘what if’ I knew the signs and symptoms of preeclampsia. The Foundation's goal is to get rid of the 'what if's' by raising awareness about this disease, providing support to those affected by the disease (extended family as well), educating and encouraging healthcare communities to get involved, and funding research for a disease that is extremely underfunded.

Review from Guidestar

8

Volunteer

Rating: 5

I found the Preeclampsia Foundation after my own life-threatening experience with severe preeclampsia. I was still struggling – two years after my daughter’s emergency premature delivery - to fully understand what my body had been through, and why even the doctors had been so baffled by my condition. As I contemplated another pregnancy I began a quest for more answers. It was heartening having one place (the Preeclampsia Foundation website) where I could access the most accurate info, and join a community forum of other survivors who could truly relate. As I learned more about the organization’s work, I was driven to become involved in helping to make a difference for others.

Review from Guidestar

7

Volunteer

Rating: 5

I am a preeclampsia and HELLP Syndrome survivor who became aware of the Preeclampsia Foundation after my near-death pregnancy experience when I was resarching the medical facts behind what happened to me. I found the Preeclampsia Foundation website and learned of a vounteer training that I attended in 2006. At that conference, I was impressed with the professionalism and organization of the group. I was surprised to learn, however,that at that time, the organization was entirely volunteer led. Since that time, the Foundation has evolved to the next step in hiring professional staff but still operates with a high level of fiscal responsibility. More personally, the Foundation and its volunteers helped me significantly during a key point of my recovery. The Preeclampsia Foundation works to reduce the risks of adverse maternal and fetal outcome resulting from preeclampsia and other hypertensive related disorders of pregnancy by raising awareness about the conditon, providing professional education opportunities for healthcare providers, acting as a catalyst for and funding research, and providing outstanding patient/family support in person, through a dynamic online Forum, and via a toll-free hotline.

Review from Guidestar