Preeclampsia Foundation

Rating: 4.93 stars   14 reviews

Issues: Health

Location: 6905 North Wickham Road Suite 302 Melbourne FL 32940 USA

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.

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Community Reviews

Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

2008 - present.

If I had to make changes to this organization, I would...

add more Canadian involvement.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

Internet search

When was your last experience with this nonprofit?

2011

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Rating: 5 stars  

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!

I've personally experienced the results of this organization in...

I had Pre-e with HELLP in 2008. The foundation gave me answers and support through a very hard time.

If I had to make changes to this organization, I would...

Make it more well known. So every woman out there aware of Preeclampsia, and how it can happen to ANY woman....

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2011

Was this review helpful? 
Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

The forums. They helped a lot in my grieving process.

If I had to make changes to this organization, I would...

More news coverage

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

I met great new friends as well as new skills.

How did this volunteer experience make you feel?

I felt great. Not only that I was able to pull something like this together, but that I am helping raise awareness.

When was your last experience with this nonprofit?

2011

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Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

Emotional support

If I had to make changes to this organization, I would...

none

Was this review helpful? 
Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

I've personally experienced the results of this organization in seeing more funding dedicated to research and more research shared through the newsletter and website.

If I had to make changes to this organization, I would...

If I had to make changes ot this organization, I would secure even more funding to support staff work in facilitating communication, fundraising, and research.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

What specific problem, purpose, priority, or project prompted your gift?

My daughter and I are survivors of preeclampsia.

Why did you make your donation at this time?

The timing was right for ongoing support.

What would you tell others about this organization?

I would tell others that the Preeclampsia Foundation is an expectant mother or survivor's best source of information and support for learning and managing the conditions of preeclampsia, eclampsia, and HELLP Syndrome.

When was your last experience with this nonprofit?

2011

Was this review helpful? 
Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

I've personally experienced the results of this organization in seeing more funding dedicated to research and more research shared through the newsletter and website.

If I had to make changes to this organization, I would...

If I had to make changes ot this organization, I would secure even more funding to support staff work in facilitating communication, fundraising, and research.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

What specific problem, purpose, priority, or project prompted your gift?

My daughter and I are survivors of preeclampsia.

Why did you make your donation at this time?

The timing was right for ongoing support.

What would you tell others about this organization?

I would tell others that the Preeclampsia Foundation is an expectant mother or survivor's best source of information and support for learning and managing the conditions of preeclampsia, eclampsia, and HELLP Syndrome.

When was your last experience with this nonprofit?

2011

Was this review helpful? 
Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

Healing. After suffering our loss, it was healing to find others that knew exactly what kind of pain I was dealing with. Now by working together, there is a new sense of healing that has lead to growth.

If I had to make changes to this organization, I would...

continue to see it grow. There are so many women that have no idea we exist and have no idea about preeclampsia.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2011

Was this review helpful? 
Rating: 5 stars  

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.

I've personally experienced the results of this organization in...

It has helped me connect to others, keep up on the latest research, and use my professional skills to advance awareness of preeclampsia.

If I had to make changes to this organization, I would...

Get information into every OB/GYN office - increase the presence of the foundation in the place where most women first hear about the disease. Ensure that every woman is aware of preeclampsia, just as they are all aware of breast cancer.

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Rating: 5 stars  

8 people found this review helpful

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.

I've personally experienced the results of this organization in...

I have been participating in the Preeclampsia Foundation's awareness walks since they began in 2005. The events have grown in number, participants, and fundraising dollars over the years. And to see the walk website unveiled this year was exciting.

What I've enjoyed the most about my experience with this nonprofit is...

the women who I have met. We come from all walks of life, but share a common bond called preeclampsia. My experiences have led me to meet people I would have never otherwise met and I am thankful for that.

The kinds of staff and volunteers that I met were...

very passionate and excited about the efforts the organization is making.

If this organization had 10 million bucks, it could...

fund someone to find a cure & cause for preeclampsia. The organization could touch so many more lives with even $100,000. From awareness events & campaigns to making more resources available for professionals to being able to assist families affected.

When was your last experience with this nonprofit?

2010-6-01

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Review from Guidestar
Rating: 5 stars  

7 people found this review helpful

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.

I've personally experienced the results of this organization in...

the amazing support I've received. When I was pregnant with my son after having had pre-e with my girls, I found women who were encouraging and information about my disease. My work with them also helps me to feel that my daughters are still with us.

If I had to make changes to this organization, I would...

make it bigger! I want them to have money coming from everywhere so that they can find a cure to this disease, find a cause and give me answers. I want more people to know about pre-e so that they get medical attention when needed and save lives.

What I've enjoyed the most about my experience with this nonprofit is...

the amazing women I've met along the way. They are all women who have walked in my footsteps in someway or another. It's a bond none of us want, but one that comforts me immensely.

The kinds of staff and volunteers that I met were...

Dedicated, passionate and willing to dedicate numerous hours of their time in order to further our mutual cause.

If this organization had 10 million bucks, it could...

Amazing. I'm sure they would do wonderful things with it...research, awareness. I think I would cry if we had $10 million!

Ways to make it better...

we had a cure! I hope one day we're able to close up shop!

In my opinion, the biggest challenges facing this organization are...

Our lack of funding. Pre-e isn't sexy, but it touches so many women. In this day and age, women and babies just should not be dying like this!

One thing I'd also say is that...

Working with this group has been so therapeutic for me. It's not always easy to talk about the night you held your daughters as they died, but I know I'm never alone...my family, my friends, my doctors and PF have all been there for me.

When was your last experience with this nonprofit?

2010-6-01

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Review from Guidestar