JULY 2015
PREECLAMPSIA FOUNDATION NEWS

Survey results hot off the press!
When asked to rank our mission areas in order of importance, you made it clear they all have value. In rank order, they are:
1) Provide patient education and support
2) Improve healthcare practices
3) Raise public awareness
4) Catalyze research

Thanks to those of you who responded to our recent Supporter Feedback Survey! As the nation's only non-profit patient advocacy organization dedicated to preeclampsia, HELLP syndrome, and related hypertensive disorders of pregnancy, we highly value the trust and confidence of our benefactors and supporters - and your opinion definitely counts.

 

Here are some survey highlights about other supporters like you: 

  • 75% of respondents are survivors of preeclampsia, HELLP syndrome, or other hypertensive disorders of pregnancy
  • 27% are primarily event participants
  • 22% are primarily donors
  • 82% are moderately to extremely familiar with our mission
  • 85% wouldn't care more about the cause if we engaged a celebrity spokesperson
  • 91% prefer to hear from us through email
  • 99.7% are likely to refer us to a family member, friend, or colleague

Top three preferred ways to get peer-to-peer support:

1)      Community forum (www.preeclampsia.org/forum)

2)      Email

3)      Facebook

 

This is just a snapshot of the valuable information that you provided about your communication preferences and the direction of the Foundation. We will use these and other survey findings to better serve you. If you didn't have a chance to complete the survey or have other thoughts that you'd like to share, please... 

Double your donation!
Matching gifts are an easy way to double or even triple your donation. Many companies support employee philanthropy by offering matching gift programs. Be sure to ask your employer about its matching gift program to maximize your donation -- it's as easy as 1-2-3 to double your impact!

Contact us with your employer matching questions at matching.gifts@preeclampsia.org.
Tips on how to be your own patient advocate

By Ushma Patel

 

A preeclampsia and HELLP syndrome survivor, Ushma volunteers for the Foundation in several ways. Born and raised in Maryland, Ushma lives with her husband and daughter near Raleigh, NC.

 

As a health services researcher, I develop and test materials for patients and families that encourage them to speak up and ask questions. No surprise that when I got pregnant with my first child in June 2013, these actions were always on my mind when I visited the doctor.

 

My pregnancy was quite typical - I experienced the usual symptoms such as morning sickness, heartburn, fatigue. Every appointment, I would walk in with a long list of questions for my doctor. Most of my concerns were brushed off as a normal part of pregnancy. The doctors weren't worried and neither was I.

5 programs you funded through Promise Walk giving

We're nearing the end of our 2015 Promise Walk for Preeclampsia season so let's take the time to celebrate all that we've accomplished! With only $10,000 left to hit our national goal (you can still donate at www.promisewalk.org), it gives us a great time to reflect on exactly what $490,000+ accomplishes in our mission. Here are just a few programs that would not happen without the funds raised by the Promise Walk:

 

(1) The Continuum of Care Healthcare Provider Outreach program. Our staff, with support of local volunteers, travels across the U.S. to meet with thousands of doctors, nurses, midwives, doulas, childbirth educators, and other healthcare providers to provide lifesaving, low-cost education materials and training. Not only does this program help educate providers about the importance of educating patients, it raises vital awareness of the Foundation and its services that care providers, in turn, share with their patients.  

The Preeclampsia Registry moving forward with 2,000+
The Preeclampsia Registry has reached an important milestone with more than 2,000 participants enrolled! We would like to thank those of you who are participating as we continue to build on the valuable information gathered. 

The first of its kind to focus solely on hypertensive disorders of pregnancy, The Preeclampsia Registry captures self-reported and clinical information, and family and pregnancy history. Overseen by an Institutional Review Board, the registry ensures participants' privacy and rights in medical research.

"We have several research studies in various stages of development using the Registry," said Alina Brewer, research coordinator for The Preeclampsia Registry. "One is looking at the genetics of symptoms that women experience, or don't experience. Another will analyze the 'patient journey' from illness to diagnosis to management. And with the launch of our biobank, we've been able to collect DNA samples on 500 participants that will help us study preeclampsia's connection to cardiovascular disease."  

 

For more information or to enroll, go to www.preeclampsia.registry.org.
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