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For Dallas-area volunteer Nicole Purnell, fundraising for the Preeclampsia Foundation is nothing new: she is currently in her fourth year as the Dallas-Ft. Worth Promise Walk Coordinator. So when she and her family decided to do another fundraiser for the Foundation, they decided to try something entirely different, and catered to their home state of Texas: a clay-shooting tournament to be held March 10.

"Of course, I realize that shooting clays is not an activity for everyone's taste, but this IS Texas after all!" explained Purnell. In organizing the event, she and her stepfather, who is co-hosting the tournament, realized that this would be a unique opportunity to pull in a different crowd than that of the Promise Walks for fundraising and awareness.

"My stepdad is a retired Navy SEAL and has many friends who enjoy clay shooting," Purnell said. "I had been wanting to do a clay shoot event for some time, and then, one day I got my daily Groupon e-mail. Low and behold, there was a clay shooting location about 20 minutes from my house! The location, Fossil Pointe Sporting Grounds, is on approximately 400 acres of prime North Texas "Hill Country" with amazing views."

The concept is similar to that of a golf tournament, but with a course made up with 12 automatic stations, that each throw a different pattern and number of clays, for a course total of 100 clays. The event will also have warm-up games for anyone that has not shot sporting clays or wants to freshen up on their skills.

After finishing the course, participants will be treated to dinner, an awards ceremony, live auction and a raffle that includes a beautiful Benelli Montefeltro 20-gauge shotgun. Tickets can be purchased now until March 10 or until tickets are sold out. Anyone can buy raffle tickets, sign up individually or with a team to shoot, or come to dinner and bid on the auctions. Raffle winner does not need to be present to win. For more information, please contact Nicole Purnell.

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Perinatal Outreach Educator Networks (POENs) are generally funded by individual states to provide perinatal (the care offered to a mother and child just before and just after birth) medical education to health care providers in the region, enhancing the quality of care for mothers and infants and reducing morbidity and mortality. Specialists share their experience and knowledge with other physicians and community hospitals across regions by offering or facilitating programs such as physician and nurse consultation services, continuing education for health care professionals, emergency medical transport for referring hospitals within the region, consultation and technical assistance on emerging perinatal issues, and sometimes even lending libraries.

For example, in Illinois, there are 10 perinatal centers designated by the state. Rush Hospital in Chicago is home to the the largest network, involving 18 hospitals delivering more than 30,000 infants. The Rush Perinatal Center maintains a 24-hour hotline to facilitate the transfer of high-risk mothers and infants. Through the perinatal center, Rush offers an extensive series of classes for physicians, nurses and other health professionals. Other centers are housed out of the Other centers are housed out of the University of Chicago Perinatal Center; John H. Stroeger, Jr. Hospital of Cook County Perinatal Center; Northwestern/Childrens/Evanston Perinatal Center; University of Illinois /Christ Perinatal Center; Loyola University Perinatal Center; Northwest Illinois Perinatal Center - Rockford Memorial Hospital; North Central Perinatal Center - St. Francis Hospital; South Central Illinois Perinatal Center - St. John’s Hospital; Southern Illinois Perinatal Network - SSM Cardinal Glennon Children's Medical Center and SSM St. Mary’s Health Center.

These regional networks have been widely credited as one of the principle reasons for the rapid decline in neonatal mortality rates in the last several decades. Although, the other principal reason is the introduction in the late 1980s of surfactant replacement therapy, which reduced the incidence of lung disease in newborns.

In Illinois, especially the Chicago area, Preeclampsia Foundation volunteers have been making presentations about the Foundation to various perinatal networks. These volunteers share their stories and information about resources available through the Foundation. They also ask for input on what additional materials would be helpful. From these discussions came the development of a unique HELLP syndrome seminar involving a point-counterpoint type of presentation contrasting the input of Dr. Judith Hibbard of the University of Illinois-Chicago against that of HELLP survivors' real world experiences. As a result of these presentations, orders for the Foundation's patient education materials have increased tremendously. These interactions have also provided good opportunities for raising awareness about upcoming Promise Walks for Preeclampsia™.

Debbie Schy from Advocate Lutheran General Hospital is one of the current co-chairs of the Perinatal Outreach Educators of Illinois and has attended presentations from Foundation volunteers. "We're so appreciative of the volunteers from the Foundation," said Schy. "They are a phenomenal group and we are lucky to have you here."

The Foundation is working with local volunteers to take the success we've enjoyed in Illinois to other major markets across the nation.

 

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Posted on in Research

Currently there's no way to know for certain whether preeclampsia will develop during any given pregnancy. This leaves pregnant women and their care providers with little choice but to wait for symptoms to appear... dangerous symptoms that mean the disease has progressed to the point where mother and baby are critically ill and will need intensive monitoring and carefully timed delivery to protect their health and lives. The only screening method to date is to measure those symptoms when they appear.

Early detection wouldn't be a treatment. But what if a screening test could let us know, weeks or even months in advance, that we'd probably be getting ill? Knowing might change the way we seek care - possibly choosing specialist care providers with the education and experience to manage medically complicated pregnancies. Women in parts of the world (like Wyoming in the winter) where such care is in short supply might be moved to bigger cities where NICUs and maternal-fetal medicine (MFM) specialists are more accessible. Neonatal specialists could be brought into the consulting team, and steroid shots to accelerate fetal lung development could be planned. All of these interventions together have the potential to lower the rates of fetal and maternal death and severe complications dramatically. (By the way, you may agree or disagree with this assessment; either way, we'd really like to hear your perspective in this important survey we recently launched.)

 

Since many experts consider such a test preferable to our current screening methods, recent research has tried to find a workable test with high levels of both specificity and sensitivity. An ideal test would be one that picked up *all* cases of preeclampsia - it would be sensitive - and *only* cases of preeclampsia, with no false positives - it would be specific. In practice this is all but impossible to achieve, but it's quite possible to find tests with very high levels of sensitivity and specificity, with one measure performing slightly better than the other.

 

So for researchers this creates a choice between creating tests that would produce false positives, and tests that would miss some cases. The worst-case scenario of a false positive is likely to be unnecessary close monitoring; it would not be an indication for immediate delivery. It would provide a reason to follow the pregnancy more closely for symptoms that do indicate that the acute phase of the illness has developed. Since the worst-case scenario of a false negative is a missed case of preeclampsia leading to death of mother and/or baby, public health researchers would prefer to develop tests that will overdetect cases of preeclampsia, but with a low rate of false positives.

 

At a meeting of the American Society of Nephrology (ASN) in November, Dr. Vesna Garovic (Mayo Clinic) reported on a study into the use of urinary podocytes as a screening test for preeclampsia, a test that may turn out to have both high sensitivity and specificity for preeclampsia. Podocytes are cells which line the blood vessels in the kidneys and act as filters which keep protein in the bloodstream. Their loss allows protein to spill into the urine, one of the primary signs of preeclampsia.

 

Garovic's research team used a population of 267 women and collected their urine between 25-28 weeks gestation. The samples were examined for podocytes. The 15 women who went on to develop preeclampsia all had podocytes in their urine at that gestational age. The 15 women who developed gestational hypertension did not. The control group of women who had normal pregnancies also did not.

 

Previous research from the same group has indicated that podocytes are present in the urine when preeclampsia symptoms first appear. When they shed into the urine, they cause disruptions in the filtration barrier in the kidney, resulting in proteinuria. The "classic lesion" of preeclampsia - glomerular endotheliosis - may include the loss of these podocytes from the glomeruli in the kidneys.

 

To confirm that this test works well, it will need to be repeated in multiple centers serving broader populations of pregnant women, and to make it available for general use, it will need to be turned into a commercially available testing product. That said, these are very hopeful results - unlike the soluble factors researchers are also pursuing, podocytes appear to only be elevated in women who go on to develop preeclampsia. The soluble factors are elevated in all pregnant women, and just unusually elevated in preeclamptics, which makes it very difficult to develop a screening test with high sensitivity and specificity.

 

Interestingly, it's likely that the podocytes are damaged because of the increased level of sFlt-1, which binds VEGF, which impairs repair of the podocytes and increases the rate at which they die off. It seems likely, given this new research, that it will be easier to detect the damage to the podocytes themselves than it will be to detect an increase of the soluble factors above the point where damage is likely.

 

If it's possible to develop a test similar to a standard pregnancy test, this might be a very effective method which wouldn't require laboratory work, and would make screening much easier and more rapid. Pregnant women who will likely go on to develop preeclampsia could be moved to the care teams that manage complications before they are critically ill, allowing both them and their babies to receive appropriate medical care that would probably reduce poor outcomes substantially.

 

 

A special thanks to Dr. Vesna Garovic at Mayo Clinic, for her expertise and technical input.

 

 

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Becky Sloan, National Promise Walk Director

What was your experience with preeclampsia?
I began experiencing face and body swelling and headaches at 22 weeks. These symptoms, along with extreme weight gain, bouts of high blood pressure, and lower fetal movement continued until 31 weeks. My doctor was never concerned with my symptoms and told me, "If you don't stop gaining weight, you'll gain 70 lbs. before your pregnancy is over." I didn't make it out of the office before I burst into tears. I felt awful, like no one cared how I felt, and I still had no idea what preeclampsia was because the signs and symptoms were never mentioned to me. I was never diagnosed with anything more than 'being a first time worried mom.'

I had a doctor's appointment when I was just one day shy of 32 weeks and despite my excruciating headache I was sent home and told to continue to take Tylenol. Later that evening I was home alone, and could no longer take the head pain. I called Labor and Delivery to ask for help and was told I needed to go to the hospital to be assessed. I somehow had enough sense to know that things were not right and that I shouldn't wait for a ride. Luckily I didn't wait, because if I had waited for a ride from a friend or even an ambulance I don't think I would be here today. Eleven short minutes after my arrival at the hospital, I went into code blue eclamptic seizures and lost consciousness. My husband didn't have a cell phone at the time, so I had no way to contact him. He came home to a Post-It note on our door that said I had gone to the hospital. He had no idea what he was about to face: three hours of not knowing if his new wife and baby would survive this ordeal.

I am happy to say we both did! On October 30, 2004, our son, Jacob William, was born two months premature due to severe preeclampsia, and surprisingly neither one of us had any lasting health issues. We have since been blessed with a baby girl, Brynn Holland, in 2008. I experienced the sudden onset of preeclampsia and was in the first stages of HELLP Syndrome when Brynn was delivered immediately on the same day of diagnosis at 36 weeks.

Why do you volunteer for the Preeclampsia Foundation?
I volunteer because although my family and I are some of the lucky ones, what happened to me wasn't OK. Many Foundation volunteers unfortunately are here to honor those whom they have lost. I am here to stand up and say that you shouldn't have to lose a child, daughter, sibling, aunt, or grandchild in order to make a difference. My first pregnancy experience should have been different, and because of the Foundation my second pregnancy was as normal as it was ever going to be after being labeled high risk. My first doctor was obviously incredibly uninformed about preeclampsia, which in turn made me unaware of the disease. My second doctor, the one who saved our lives, was obviously informed, but more importantly I was informed. I volunteer to raise awareness by telling my story. If my first doctor would have known the symptoms; if I had known the signs and symptoms, maybe my story would have been different.

What does it mean to you to be awarded the 2011 Hope Award for Volunteer of the Year?
The Promise Walks are so appropriately named and that promise is very dear to my heart and to all my family. I look forward to the day when preeclampsia and other complications of pregnancy are relegated to history books because research has found preventions and solutions, and the education of women and of members of the medical profession has eliminated needless suffering and sorrow. Hope is what we all need; hope is what this organization provides. Thank you for this opportunity to once again cry with you (something I do often and those close to me know this), but this time I cry for joy.

What has been your most gratifying moment as a Foundation volunteer?

This is a tough question for me. I think the success of the Promise Walks has finally sunk in. Every time we add a new city to the map, it is definitely a moment to enjoy. I continue to have high expectations for the Promise Walk and myself as a volunteer. The fact that I have been able to encourage and support volunteers around the country in bringing awareness to their city and raising funds for the Foundation is very gratifying.

What are your continuing goals for your work with the Foundation in the near future?

I can say that I am very proud of the work I have done thus far with the Promise Walk for Preeclampsia. I will continue to work to bring Promise Walks to more cities so that others can use the walk platform to raise awareness and funds. My personal goal is to enable the Foundation to continue its mission, ensuring healthy pregnancies for all women and delivering hope to millions of families around the world.

 

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The Foundation is closely tracking and providing perspective to Congressional efforts related to maternal and neonatal health and well-being, especially as they may impact preeclampsia awareness and related care. Two pieces of legislation of interest are the PREEMIE (Prematurity Research Expansion and Education) Reauthorization Act and the Birth Defects Prevention, Risk Reduction and Awareness Act.

The PREEMIE Reauthorization Act, sponsored by Reps. Leonard Lance (R-NJ), Anna G. Eshoo (D-CA) and Senators Lamar Alexander (R-TN) and Michael Bennet (D-CO), would expand research, education and intervention activities as they relate to preterm birth. The legislation will also work to promote the use of evidence-based standards of care for pregnant women. The original PREEMIE Act was signed into law in December 2006, and the programs supported through the law at the Centers for Disease Control and Prevention and other federal agencies and subsequent resources provided to states are in need of reauthorization in order to continue and expand.

The Birth Defects Prevention, Risk Reduction and Awareness Act, sponsored by Rep. Rosa DeLauro (D-CT) and Senator Kay Hagan (D-NC) seeks to provide information to pregnant women and their health care providers about medications, chemical exposures, infections and other exposures linked to adverse outcomes to a healthy pregnancy, including birth defects. The legislation provides funding for pregnancy risk information services (PRIS) that provide counsel to women. Over the years, several of the centers that provide these services have closed due to lack of funding. Recent research has identified a link between women who suffer asthma being at greater risk for preeclampsia. The services offered through PRIS could offer resources to help women understand risks such as this.


The Preeclampsia Foundation joins the March of Dimes Foundation, the American Academy of Pediatrics, the American College of Obstetricians and Gynecologists, and the Association of Women's Health, and Obstetric and Neonatal Nurses in supporting both of these important pieces of legislation.

 

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Posted on in MAKE A DIFFERENCE

1. What was your experience with preeclampsia?
My partner and I had tried for a couple of years to conceive our first child, and finally succeeded in 2009. I felt fabulous during the pregnancy, except that I developed an annoying cough that got more frequent and more productive as the months went on. I mentioned it a hundred times to my doctor, but he always shrugged it off, saying pregnant women often have excess mucus. At 7 months along, I expressed concern to my doctor that I had only gained 12 pounds, but again, he said it was not a problem. Based on my gut instinct that something wasn't right, I insisted on an ultrasound that day, which showed my son was severely growth restricted. He was delivered that night (at 31 weeks) via c-section. He weighed 1 lb 15 oz. We named him Mack. Despite showing all signs of doing great for over a week, Mack developed an infection in the hospital and died when he was 10 days old. I was later diagnosed with postpartum preeclampsia (high blood pressure), which subsided after about a month. But, a year and a half later, the loss of my baby Mack remains with me every moment. My cough never subsided, so I saw an allergist who diagnosed me with cough-variant asthma. The new study recently published in the British Journal of Obstetrics and Gynecology showing a link between uncontrolled asthma and low birth weight/preeclampsia weighs heavy on my heart... if only my doctor and I did more to diagnose my asthma during the pregnancy...

2. How aware were you about pre-e before/during your pregnancy?
I was totally unaware of preeclampsia. In fact, I'd never heard of it. This was my first pregnancy. I am healthy and did everything right during my pregnancy, so naturally I figured everything would go smoothly. After my son was born, and died, I leafed through to the back of my well-worn copy of "What To Expect When You're Expecting" and found the "When There's A Problem" section about Preeclampsia. Only then did I realize that some of the symptoms applied to us.

3. Why do you volunteer for the Preeclampsia Foundation? What volunteer positions have you held?
I have donated my graphic design services to the foundation, for the Expectations newsletter, website, and for the "I am a Preeclampsia Survivor" tee shirts.

4. What are your goals and dreams for your involvement with the Foundation?
No pregnant woman wants to think about there being a problem in her pregnancy. It is not until you've had a problem that you allow yourself to go there. My goal would be to encourage pregnant women to be educated, without getting spooked by the suggestion that there could be a problem. I showed no signs of preeclampsia. I only had a gut feeling that something wasn't progressing right. And that's what I would encourage all women to do, don't just take your doctor's word for it, listen to your gut.

5. What has been your most gratifying moment as a Foundation volunteer?
Receiving my "I am a Preeclampsia Survivor" tee shirt in the mail with my design on the front and knowing that I am part of a community of women, and men, who provide comfort to one another through our collective memory of what is probably the most frightening moment in each of our lives, and accepting that we will be forever changed after having survived through it.

 

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Filtering the Factors
A new therapy may be developed for very preterm preeclampsia patients, if the results of a small pilot study are confirmed in a larger trial. Researchers have been looking for a safe way to prolong pregnancy by at least the 48 hours needed to allow steroid shots to mature fetal lungs. (Each safe extra day in utero eliminates two or three days in NICU, and means higher survival rates for many of the babies affected by preeclampsia.)

In 2003 a paper published by Dr. Ananth Karumanchi in the Journal of Clinical Investigation presented evidence that a protein named soluble fms-like tyrosine kinase (sFlt-1) caused many of the symptoms in preeclampsia. Karumanchi studied the placentas from preeclamptic pregnancies and found that they were producing far more sFlt-1 than the placentas from normal pregnancies. The protein binds to another protein and compromises the repair of blood vessels, leading to many of the symptoms such as hypertension and proteinuria as damage to the maternal bloodstream accumulates. Since then, dozens of studies have confirmed the role of sFlt-1 in preeclampsia, although as with all scientific research there are likely to be further interesting developments.

A recent paper published in Circulation reports on a small pilot study by Drs Karumanchi and Ravi Thadhani that seeks to filter out excess sFlt-1, thus prolonging the pregnancy. Initially the treatment was only offered once, so that researchers could confirm that it did not worsen matters. After confirming that it did drop sFlt-1 blood levels without any obvious complications, the trial looked at the effect of multiple treatments. In the three women with very preterm preeclampsia where this therapy was attempted more than once, delivery was delayed by two or three weeks before delivery became necessary.

However, since this therapy won't help the placenta implant any better in the first phase of pregnancy, this approach won't eliminate the disease. And since sFlt-1 is only one of the proteins implicated in the development of the disease, women and babies will still suffer some preeclampsia symptoms even if this protein is removed from maternal circulation. However, this targets some of the symptoms that make delivery most urgent. This approach appears to be supported by the basic research and current understanding of this condition and is promising, although very preliminary. A much larger trial will need to be conducted to confirm these results and to confirm the safety of this strategy.

Asthma Increases Risk for Preeclampsia
This month the British Journal of Obstetrics and Gynaecology published a meta-analysis of many smaller studies which reported a correlation between poorly-controlled asthma and preeclampsia. Women with poorly-controlled asthma were at 1.5 times the normal ~5% risk of developing preeclampsia. This means that many women with bad asthma symptoms had normal pregnancies, and that many women with no asthma developed preeclampsia, but more women with poorly-controlled asthma developed preeclampsia than would have been expected.

In a normal pregnancy, the placenta is able to establish what's known as "maternal tolerance" - the mother's immune system tolerates the foreign placenta and doesn't try to reject it. When this tolerance is established, it often affects other immune conditions (like asthma) as well, and the symptoms of those conditions will improve during pregnancy. So when symptoms actually worsen instead of improving, it can be a warning that maternal tolerance hasn't been properly established, which can alert the pregnant woman and her care providers that she is more likely to develop preeclampsia.

If your asthma symptoms worsen in pregnancy, please do mention this study and the worsened symptoms immediately to your care providers and follow up as they recommend.

Stroke on the Rise
The CDC reported that their hospital data show a substantial rise in the number of pregnancy-related strokes between 1994-1995 and 2006-2007. This rise correlates almost exactly to the rise in rates of hypertension and obesity in the population of pregnant women over that timeframe. The increase translates to an increase from 15 to 22 strokes per 100,000 pregnant women. Preeclampsia is the most likely explanation for this dramatic rate increase of 47%. Women with a history of hypertension or obesity can improve their chance of a safe pregnancy outcome by working closely with their care providers to watch for preeclampsia symptoms and treating the condition in a timely fashion if it does arise.

 

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The 2011 Promise Walk has come to an amazing close and the Preeclampsia Foundation is already looking toward 2012! Have you considered hosting or volunteering at a walk? Even if you have just few hours to volunteer, we need you! Join us for the first Promise Walk planning call of the 2012 season on September 13 to learn about what it means to organize a Promise Walk, or email National Walk Director Becky Sloan about how you can support the efforts.

In 2011, Promise Walks were held in 24 locations, and for 2012, we are looking for eager volunteers who are interested in creating even more new walk sites or in volunteering a few hours to help an existing walk be successful. Organizing a Promise Walk is a little like a planning a party…if you’ve put on a birthday party or organized a wedding you are likely qualified to plan a Promise Walk!

There are five main components of helping to organize a successful Promise Walk: Logistics, Sponsorships, Registration, Advertising, and Fundraising. And, there are plenty of tools to assist you in each of those areas – as well as dozens of experienced Walk coordinators who will happily share their insights and advise. The Promise Walk is also a great opportunity to build a network of preeclampsia survivor volunteers to divvy up the work and generate support in your local community!

So here is what it takes:

  • Logistics – To successfully advertise, fundraise for, and attract participants to a Promise Walk, location is everything! Great locations include public parks, open air malls, school stadiums, or any outdoor location that achieves great visibility and accommodates the size of your walk. Consider what your walk route will be, where people will gather to register, and what additional activities (program, silent auction, raffle, etc.) you might want to add to your walk. Bring a friend, family member or other volunteer to help you think through the process and determine what is reasonable for you and your local volunteer team! It never hurts to attend other walks or runs in different locations in your area to get a feel for what a site offers and how it can be utilized.
  • Sponsorships — Corporate and local businesses can be fantastic event partners that involve your local community and help your walk make money by through underwriting of many of the costs associated with planning the event. The national Promise Walk team has several tools that will help you identify sponsor prospects, approach them, and make a proposal. Some businesses may be interested in making an non-cash donation of necessary items like food and water which will help to increase your net income. Sponsorships can take time to come to fruition, but a good way to begin moving in the sponsorship direction with a business might be to encourage registrants of your event to see if they can get their employer to form a Promise Walk team. And don’t forget those business located near your Walk site; your event may bring a couple hundred people to their doorstep – engaging them can be a win-win for both parties.
  • Registration — There have never been more tools available to help drive registration: email, Facebook, Twitter, word-of-mouth to family and friends, Community Forum postings, or contact with local health care providers and businesses. The more people you have at your walk, the more impact you’ll make. And, of course, the Promise Walk website (www.promisewalk.org) makes registering a cinch!
  • Advertising — Advertising and promoting the Walks can take many forms. The Foundation provides press release templates for all coordinators to use in reaching out to local media to generate news articles and awareness. Requesting a Proclamation declaring May Preeclampsia Awareness Month in your city, county or state will help call attention to the cause with policy makers and will help the Preeclampsia Foundation gain national attention. Flyer templates can be printed full size or postcard size and taken to businesses near your Walk site or to women-, pregnancy-, and family-friendly enterprises to help people learn about your event. Many radio stations will offer free public service announcements that can help promote your Walk. Finally, don’t forget the web! There are many community calendars that accept free event postings.
  • Fundraising — Budget, plan, and execute! Budget to cover all your essential expenses, plan to reach out to any and all contacts to try and get those costs covered outside of your budget, and execute on event day! While much of the fundraising may happen prior to your Walk through personal donations in support of your participants, don’t overlook the opportunity to include activities at your event that will add to your bottom line: bake sales, silent auctions, raffles, etc. And, your program itself could inspire additional giving at the event. Some walk sites have created new categories of sponsorships that allow donors to purchase a special sign or placard recognizing a loved one along the Walk course.

Think you have it in you? The Preeclampsia Foundation believes you do and the national Walk team will be there to assist you. We promise you, you’ll be standing there on Walk Day, you’ll take a moment to look around, and you’ll realize you did it, your team did it. You made it happen and all these people are there because you said, “yes”!

 

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Planning and organizing a Promise Walk and 5K Run are no easy task, but the contributions of critical sponsors and donors makes it all worthwhile. For the Chicago event, local sponsors do more than contribute financially, as is evident by these diverse conributions:

One of the local Chicago suburban hospitals, Northwest Community Hospital and a stationery company sales associate, Dee Dee McCoy, contributed financially as Gold Sponsors. Runners High 'n Tri, a popular local running store, provided bibs for Walk and race participants and two days of packet pick-up; DJ Eric Rain of Hanover Park and AMP Entertainment kept the crowd upbeat by spinning tunes and entertaining our many families and kids; CTI Industries of Lake Barrington donated more than 100 colorful, helium balloons; WomanCare OBGYN offices of Palatine, donated giveaways for goodie bags and high-dollar raffle prizes, and the local T-Mobile helped staff the day-of registration booth with a hotspot that enabled immediate credit card processing. Without these sponsors, the Chicago walk would not have been able to raise more than $25,000 to help fund research and raise awareness.

One donor, Tracey Abdelhadi, the manager for the Lake Zurich Panda Express, had a personal motivation for contributing to the Chicago Promise Walk: she is a fellow survivor. Her restaurant donated food for the volunteers the day of the event, a case of bottled water, fortune cookies and coupons for the goody bags to be stuffed and had a Team Panda with about 10 walkers. I also became friends with Tracey and through that personal connection got to hear her story.

Tracey explained that as a mother of five children and survivor of preeclampsia, she was honored to support the work of the Preeclampsia Foundation and to help every mother and child survive to tell their stories.

"Twenty-nine years ago (with my oldest), doctors were just not aware," Tracey explained. "The first time I saw my beautiful baby boy, he was in high risk with IV's in his head, scary stuff for any mother." She adds that while she hopes never to need it, she has memorized the warning signs and symptoms for her sons' wives and her daughter in the future.

Tracey praised the efforts of the Chicago group as well as the national outreach of the Preeclampsia Foundation for "doing a great service for mothers-to-be."

She finished by saying, "If only one mother with this disease was reached and saved, it was worth it! We are looking forward to next year for a bigger and better event."

 

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This was the biggest year in Promise Walk history, with more walks, more participants, and the most funds ever raised! Promise Walks were held in 24 cities in 19 different states and raised more than $271,000 for the Preeclampsia Foundation, with 2300 participants nationwide. Our largest walk hosted around 300 people. State governors and mayors proclaimed preeclampsia awareness day in 13 states and cities.

Many special tributes and fun features made each walk an inspirational and unique event. Butterfly releases in San Diego and Boston, a dove release in San Jose, survivor sashes in North Conway, personalized mile markers in Chicago, and a special feature with the Field of Cradles exhibit in Boston made each walk inspiring. Some of the fun features included face painting for kids and adults, and specialized desserts like Promise Walk heart cookies and "feet" cakes!

Walk participants at a few locations were treated to special guest speakers, including 2012 Saving Grace Co-Chairs, Pat Dignan and Lauren Larsen (author of Zuzu's Petals), Foundation Executive Director Eleni Tsigas, researcher Dr. Ananth Karumanchi, and author and reality show star Dr. Allison Hill, all of whom have dedicated their time and work to help raise awareness about preeclampsia. Volunteer Rosemary Jorden created the 2011 Promise Walk quilt that traveled around the country to six different walks. The quilt comprises 25 quilt squares, each created by a family remembering or honoring a loved one affected by preeclampsia. This quilt (along with future quilts) will continue to travel each year to different walk sites.

Walk participants also got creative with their team names: funny ("Be Fruitful and Multiply", "We Don't Need that Kind of HELLP", "Twinkle Toes", "PreE Rockstars", and "Team Down with BP)"), as well as those named in honor of loved ones ("Eli's Little Giants", "Friends of Rose Babies", "Christie's Crusaders", and "Remembering Henry").

Big congratulations to Team Cooper Landon Barnett in San Jose who was the top fundraising team, raising a whopping $8,125! This year, more than $8,000 donations also came from employer-matching funds...many thanks to those philanthopically minded companies. Does your employer match funds? Check into it and watch your donations grow!

We are enormously grateful to the many people who made the 2011 season so successful: national Promise Walk director Becky Sloan, city walk coordinators Marlene and Robert Bradley, Lori Harrison, John and Brenda Warner, Leanne Park, Laura Dale, Dawn Detweiler, Stephanie Steiner, Nicole Purnell, Jennifer Joyce, Tia Doster, Tiffany Trevers, Kelly Sullivan, Amy Mertz, Dana Russell, Terri Suffecool, Renee Feagan, Meredith Drews, Katie Rhodes, Diane Williams, Cindi & Jon Hillman, Jamie Schmidt, Kata Lakovic, Alicia Magdaleno, Chad and Kelly Thomas, Abby Hausmann-Virgil, Minda Gerst-Swisher, Karin Chitty, Johanna Aiken, Jill Siegel, Renee Martinez, Janel Kovarik, Megan Stuart, Denise Lang, Kellie Beadle, Jessica Sobat, Amanda Meier, Mindy Aucone, and Susannah Pabot, and all the hundreds of volunteers that helped the coordinators. Special recognition also goes to our national sponsors, Alere, Cord Blood Registry, and Beckman Coulter, and the many local sponsors who continue to support our efforts.

The Promise Walk for Preeclampsia™ is the largest fundraising event for the Preeclampsia Foundation, but it's also a fantastic opportunity for creating awareness in communities across the nation and offering support and healing to survivors and families who have suffered a loss. We are currently enrolling 2012 Promise Walk sites and welcome the opportunity to branch out into new cities. If you are interested in hosting a walk next year or getting more involved, please contact National Walk Director Becky Sloan.

 

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Whether it's a backyard barbeque in Dad's honor, hot dogs in the park or a play date at the swings, summer is the time to turn off the television and enjoy the easy spirit of extended daylight. It's also when we reconnect with our neighbors and friends... but it can also be a great fundraising and awareness opportunity!

Not only is it fun, but neighborhood yard sales and block party picnics are great chances for people to learn about preeclampsia and contribute to the work of the Foundation. Here's how to enjoy the sun and organize a local neighborhood block party:

  1. Invite each family to provide a side dish. Ask the manager of your local grocery store, hotdog stand or ice cream shop to donate food, water, or a sheet cake. With enough notice, most will be happy to get behind a community charity event.
  2. Line up activities like Frisbee, water balloon toss, face painting, basketball, family sack races, or inflatable bounce rental.
  3. Host in several adjoining back yards or at your community clubhouse.
  4. Spread the word with fliers, email, social media, and most importantly, in-person invites. We can help you announce your event on our website calendar and regional forum.
  5. Organize a 50/50 ticket raffle where half of the money raised from ticket sales is donated to the cause and the other half is given to winner.
  6. Get gift certificates to local businesses (floral shops, restaurants) donated as prizes. Note: When planning raffles, always be sure to check with your state laws, since some states have very specific rules about money raffles and some may require a permit.
  7. Approach local businesses to sponsor your event. Giving a donation in exchange for them having a table to promote their products or services (with a portion of that day's sales going to the cause) could be a win/win.
  8. Be aware of liability issues. Work with your municipality to make sure you have the right coverage for your event. Note: We can provide you with charity information that may be needed when applying for permits, but this would not be a PF sponsored event, therefore coverage is the responsibility of the volunteer coordinator.

And don't forget to contact Dawn Detweiler who can help you with your neighborhood fundraiser to support preeclampsia research and education!

 

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Tiffany Trevers, San Jose Promise Walk Coordinator

What was your experience with preeclampsia?

I became pregnant with our first child at age 32 as a healthy person with no chronic conditions, I was considered low-risk. My pregnancy progressed normally through the first trimester. I began to swell around 22 weeks but thought little of it, that it was part of normal weight gain. As each week passed the swelling increased and my blood pressure, which has run low to normal all my life, began to creep up. At 27 weeks I was formally diagnosed with preeclampsia, and I delivered my son weighing just two pounds at 28 weeks gestation. Rather than improving after delivery, my condition worsened post-partum, as I developed Class I HELLP Syndrome and spent several days in ICU with severe liver issues before stabilizing.

My son spent 76 days in the NICU, and as is common with preemies born that early, spent time on the ventilator, had numerous blood transfusions, had surgery on a heart ligament, and had severe pneumonia. Though his prematurity was a rough road with effects that lasted long after leaving the hospital, today he is a healthy, bright, loving 6 year old. And after years of contemplation, we decided to risk another pregnancy in 2010, that fortunately was completely preeclampsia and HELLP-free.

How aware were you about preeclampsia before/during your pregnancy?

I had heard the term preeclampsia during pregnancy but never thought of myself as a candidate, because I had always had low blood pressure. The fact that my cousin lost her first child at 24 weeks because of preeclampsia, and my own grandmother suffered preeclampsia (then called toxemia) with all of her pregnancies didn't even register with me at the time, though now I often question whether there is some sort of genetic predisposition in our family even though I have tested negative for all of the disorders associated with preeclampsia.

What volunteer position(s) have you held?

I organized the first Promise Walk for Preeclampsia in the Northern California region that was held in May 2011 in San Jose. Over 250 people attended and because of everyone's efforts, we raised over $31,000 for the Preeclampsia Foundation! Though it was a ton of work, it was an incredibly gratifying and educational experience.

Why do you volunteer for the Preeclampsia Foundation?

The Preeclampsia Foundation was such a supportive environment for me after my experience in 2005 and again as I went through a high risk pregnancy in 2010. I got so much from the Foundation and from the many wonderful volunteers that I felt it only right to try and give back something. Many of us preeclampsia survivors want to put our experiences behind us and forget this painful chapter in our lives. And yet I remember meeting a father earlier this year as we planned our local Promise Walk whose wife died from preeclampsia roughly the same time I had it, leaving behind a baby she never knew. We survivors can move on and continue with our lives, but that mother and thousands like her worldwide, cannot. We survivors must fight for a cure on behalf of these women and babies taken from us too soon who cannot fight.

What has been your most gratifying moment as a Foundation volunteer?

That is a tough one. There have been so many gratifying moments where I have felt the impact of volunteerism and our efforts. On Promise Walk day seeing everyone gathered... meeting so wonderful people from the blood centers who partnered with us at the San Jose walk to talk about the connection between preeclampsia and blood donation. Seeing what Rosalinda (my co-chair) and I started grow and take off with so many individuals and teams working to spread awareness about the Preeclampsia Foundation and to raise funds to find a cure and treatment for preeclampsia.

 

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The Volunteer Profile column often spotlights our women volunteers, but during the month of June, we are shifting the focus to an amazing group of men. These fathers and husbands have seen first-hand the effects of preeclampsia and HELLP syndrome, but instead of becoming passive observers, they have come to the forefront, volunteering their time, energy and skills.

Board of Directors Chairman Pat Dignan has been a huge supporter of the Preeclampsia Foundation throughout the years, including participating in the 2011 New Jersey Promise Walk and serving as co-chair of this year's Saving Grace gala in New York City.

"I was drawn to the Preeclampsia Foundation back in 2004 for information and understanding, several years after my first wife Donna died from the effects of severe preeclampsia complicated by HELLP Syndrome," Dignan explained. "The need for information, awareness and research about preeclampsia still remains. The Preeclampsia Foundation tries very hard to meet these growing needs, largely through fundraisers such as our annual Promise Walks, which allow us to meet our mission and work toward our goals," adding that he is thrilled to participate as the Saving Grace co-chair this year.

Volunteer Will Dale of Easton, Penn., understands that growing need for outreach and has become a vocal advocate for the Foundation's mission. Dale's wife Laura gave birth to their son, Brennan, five weeks early due to preeclampsia and experienced post-partum preeclampsia, resulting in stroke-like symptoms, persistent edema, and very high blood pressure. However, the experience had a profound effect on him.

"I know if there is any way that I can make a difference by helping save a life, I will do it and that is why I volunteer," explained Dale. "Her doctors never mentioned it... Even after the delivery of our son, there was no additional information given to us about her severe post-partum preeclampsia. I can't imagine losing Laura and it's my mission to help spread the message so that other dads and families don't go into this without the education and support they need."

Dale has become instrumental in helping his wife plan the Easton, Penn., Promise Walk. In addition, Dale ran the 2011 Walt Disney World Half Marathon with his wife to raise money to support preeclampsia awareness and education in memory of Joan Donnelly, a mother who recently lost her life to preeclampsia.

Jason Drews of Irvine, Calif., has also been personally impacted by preeclampsia, and is striving to make a difference through his support of the Orange County Promise Walk and all of their activities, as well as recently helping out with a Promise Walk video project for the Foundation. Drews' wife Meredith experienced preeclampsia and HELLP syndrome with the birth of their twins, Bridget and Elsie. In his own words, "I am a father of four but a parent of two. My girls, Bridget & Elsie, died an hour after they were born at 24 weeks gestation on October 30, 2007. Based on their size and weight, preeclampsia had begun raving Meredith's & Bridget & Elsie's bodies' weeks earlier."

At this year's Orange County Promise Walk, Drews gave a moving speech to participants, sharing, "In the 48 hours after their [the twins] death, we waited for each blood test waiting for Meredith to respond. The psychological trauma was extreme over these seemingly endless days, but I was lucky. Meredith survived. [But] It is a constant worry for me in regards to Meredith's ongoing health. The truth is as much as we know about preeclampsia we don't know enough. Preeclampsia was identified over 2000 years ago and is uniquely human. In my logical brain I believe when we really begin to understand the causes and effects of preeclampsia it could potentially give us further insight into a host of other diseases. What mysteries could be solved if we poured more support into research and the work of the Foundation?"

He also described how having the walk and participating in the work of the Foundation each year is therapeutic: "[It] allows my daughters and many others to have a voice that will never speak or can speak no more. I suppose it allows me the illusion of control when the truth is we all have far less control in our lives then we like to think. But what we do control is where preeclampsia goes from here. The dollars this walk will raise goes to research and awareness, so I encourage all of you to speak often to others of your experiences and continue to give and ask for support for the Foundation."

Volunteer Jeff Siegel has also been instrumental in his local Chicago area volunteer projects, including 2009 Saving Grace, two Promise Walks, and as the technology advisor to the national walk team. In 2004, Siegel's wife Jill almost lost her life to a severe case of HELLP syndrome. After a total of 98 days of hospitalization and rehabilitation, as well as 3 months of daily outpatient rehabilitation, Jill was finally released, only to still struggle with holding, feeding and carrying their infant daughter.

"Our experience with the disease was very painful," Siegel explained. "It greatly challenged my family financially, emotionally and physically. In fact, later we would be told by Jill’s neurologist that she was “the sickest person to leave this hospital alive.” However, in the end, we do feel very fortunate. Now we have a very healthy family and have experienced a great outpouring of support immediately from our family and friends, our religious community and ultimately from the Preeclampsia Foundation as well."

He went on to say how impressed he was from the beginning by Foundation volunteers' level of commitment and quality of work.

"This was inspiring and motivational to both Jill and I and [the Foundation] quickly became a community to which I was proud to associate myself and our family with," Siegel adds. "As well, I’m continually inspired by the work my wife does on behalf of the Foundation and continue to look for ways to help support her and her own healing efforts. The work also provides a natural platform to help spread messages of awareness and advocacy, which I believe is so sorely needed."

 

 

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On April 14, West Suburban Medical Center (WSMC) in the Chicago suburb of Oak Park, Ill., hosted a unique seminar for nurses eager to learn more about HELLP syndrome. The program's format combined two different patient perspectives with that of Maternal Fetal Medicine expert Dr. Judith Hibbard, a nationally recognized board certified clinician and researcher with expertise in high quality, cutting edge perinatal care. She is a Professor and Director of the Division of Maternal-Fetal Medicine at the University of Illinois-Chicago where she is also Co-Director of the University's Perinatal Center.

Accompanying Hibbard were HELLP survivors Johanna Aiken and Jill Siegel. The personal accounts of the births of their daughters were interspersed with medical information from Dr. Hibbard about what was happening to them at the time.

Aiken gave birth to her daughter Macy in 2003 near term but was diagnosed with HELLP syndrome thanks to the diligence of her admitting nurse who noticed high blood pressure and pitting edema and sent an extra vial of blood to the lab in order to test for HELLP. Siegel gave birth to her daughter at 29 weeks gestation after repeated 24-hour urine tests revealed elevated protein in her urine. A trip to the doctor to check her blood pressure resulted in her immediate admittance to the hospital. Within two-and-a-half days, Siegel became much sicker and delivered her 2 lb, 9 oz daughter, Brooklyn, by emergency c-section. While Aiken's HELLP syndrome resolved within a few days, she suffered visual disturbances post-partum and was unable to be with her daughter alone. Siegel also lost her vision post-partum, but her recovery was prolonged as her blood pressure continued to rise after delivery upon which the diagnosis of HELLP syndrome was made. She suffered a stroke and multiple organ failure that would result in a 93-day hospital stay.

Hibbard was able to illuminate the personal patient recollections with medical information that helped the nurses more clearly understand the impact that symptoms of their patients may be having on their pregnancies. She pointed out that there is evidence that there are angiogenic factors in the placenta that change five or six weeks before an expectant mother becomes sick but that there is still great difficulty in diagnosing HELLP because it can present itself similarly to acute fatty liver of pregnancy, acute pancreatitis, gall bladder attack, and a host of other conditions. Lab tests can sometimes provide confusing results. As a result, Hibbard recommends "over diagnosis" and careful timing of the delivery to ensure the best outcomes for mother and baby. She shared a flow chart with the nurses as a recommended guide of how to treat the patient based on the length of her pregnancy. Nurses can use this as they support the treating doctor whose job is to figure out the rate of progression of the disease.

From Hibbard's perspective, Aiken's edema signaled intravascular volume depletion and interstitial volume increases. Visual disturbances that both Aiken and Siegel experienced were likely a result of cortical blindness, the total or partial loss of vision in a normal-appearing eye caused by damage to the visual area in the brain's occipital cortex. Patients have no vision but the response of the pupil to light is intact (as the reflex does not involve the cortex).

Cerebral vasospasm, or the narrowing of a brain blood vessel due to overcontraction of the vessel wall - a state that is similar to a tightly clenched fist - associated with HELLP syndrome, may account for the fact that Siegel has no recollection of much of her hospital stay a day or so after being admitted until she awoke from a coma nine days after delivery.

Hibbard also explained how relatively new the HELLP (Hemolysis, Elevated Liver enzymes, and Low Platelets) variant of preeclampsia is; the term was coined by Dr. Louis Weinstein in 1982 based on his study of 29 cases of severe preeclampsia-eclampsia complicated by thrombocytopenia, abnormal peripheral smear, and abnormal liver function tests. She also reported that most accounts of morbidity occur on the first day post-partum. For those who do survive, Hibbard pointed out the sobering statistics of the long-term impact of HELLP: 32% experiencing depression, 33% new onset hypertension, 26% anxiety, and 19% marital problems/divorce, commenting that the hope is that by sharing this knowledge the nurses may be able to help warn their patients so that they "can work out their troubles and what they were dealt."

 

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In late April, the Preeclampsia Foundation continued its federal advocacy efforts, meeting with representatives of the National Institutes of Health in Bethesda, Maryland. Joined by Preeclampsia Foundation Medical Advisory Board member Dr. James Martin, who was recently inducted as the President of the American Congress of Obstetricians and Gynecologists, the Foundation sought to understand the breadth of preeclampsia research being conducted across the NIH institutes and centers.

The Foundation came to the meeting with three simple messages and requests: the institutes should collaborate to share research findings; NIH should report its annual spending allocations dedicated to preeclampsia and related research; and NIH should work with the Foundation and other partners to more effectively improve communication about preeclampsia research findings.

Through its efforts, the Foundation learned that 9 of the 27 institutes/centers at NIH conduct or have recently conducted research on preeclampsia. These range from the National Institute of Child Health and Human Development and National Heart Lung and Blood Institute, which together conduct a majority of research in this field, to the National Institute of Environmental Health Sciences and the National Cancer Institute.

During the meeting representatives from each institute presented on their areas of research focus and sought to learn more about the Foundation's research efforts and ways the Foundation might help make NIH information more readily available to patients and providers.

To build on this meeting, the Preeclampsia Foundation is seeking legislative language in partnership with members of Congress that would further encourage NIH institute collaboration in the field of preeclampsia research and require NIH to report its funding allocations for preeclampsia research. With this information, the Foundation hopes to begin to advocate for more efficient, effective and additional research dollars to ensure preeclampsia is and remains a focus within women's and maternal-fetal health research.

 

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Upon being diagnosed with any medical condition, it is human nature to ponder, "Did anyone in our family have that?"

This is especially the case when diagnosed with preeclampsia - what our mothers' and grandmothers' generations called "toxemia."

When I was diagnosed with preeclampsia during the 35th week of my first pregnancy, I was mystified and kept thinking: What on Earth is this? I am 27. I run. I eat well. My blood pressure is always a perfect 120/80.

But I have to say before any of these questions surfaced, I looked to my mother and asked, "Mama, did you have that?" She looked at me with tears in her eyes and shook her head no, unable to give me the normal guidance and comfort that mothers so naturally bestow.

One woman that could provide some guidance was my mother-in-law, Kathy Hutchison, who immediately called me upon hearing my diagnosis, being a two-time survivor herself. What were the odds that she too had had preeclampsia?

Fairly high, according to Dr. Ashley Hill of Florida Family Practice, who described a variety of genetic links currently being researched, including placental issues, compromised immune systems and genetic protein markers.

I questioned my mother-in-law her about her experience with preeclampsia, not realizing how much it would impact my life or that I would one day be volunteering with this Foundation to help other women like me and my mother-in-law.

According to Kathy, preeclampsia was known during the late 70s and early 80s as, "the pregnancy disease that you get and that goes away when you give birth." Though Kathy suffered from preeclampsia with her first child, (my husband) she noted that the term 'preeclampsia' was not really used until the late 80s, when she was pregnant with her second child.

The accompanying rumors and misinformation were much the same as today: If you had it with one child, you will not have it with another; giving birth is the cure, etc. Kathy noted that doctors did not tell her much about the condition, just the symptoms: protein in your urine, consistently high blood pressures, and severe edema.

She not only had preeclampsia with both her pregnancies, but her own mother had preeclampsia in the early 1950s with her and had almost lost her life. Kathy added that her mother only spoke of her experience briefly, and mentioned that she really "felt like going towards the light": not simply experiencing high blood pressure, but essentially realizing that she was dangerously close to death. When asked if Kathy believes in the generational component of preeclampsia, she quickly added, "I do. I had it and then my son produced it. How could I not?" Kathy also noted that she knew of no one else who suffered through the disease other than her mother and sister, and was given virtually no information about the potential outcomes.

Although genetic research into preeclampsia is continually changing, a well-established finding is the link to heart disease, especially in women with a history of severe preeclampsia.

In the case of Kathy, her mother, and sister, there was no such link. Heart disease was absent from their family's medical history, but then again, as she noted, "times are different." Today, women are more empowered to take responsibility for their health and knowledge about conditions affecting their pregnancy, as the Preeclampsia Foundation continually advocates.

Thirty years later, it may seem as thought nothing has changed--the same rumors, no cure, no known cause-- but there really have been some strides: identifying the link to heart disease and communities like the Preeclampsia Foundation, where women talk about life-threatening pregnancy conditions like preeclampsia. It is no longer a taboo subject among pregnant women.

So this Mother's Day, pull up a chair next to your mom, your grandmother, your mother-in-law, your sister... and share your common experience. The more we talk, the more we will know. Heart-to-heart really does work.

 

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Volunteer of the Month Spotlight - May 2011

Heather Curtis, Community Forum Director

What was your experience with preeclampsia?

I had hypertensive complications and delivered at 37 weeks with all three of my children. I've been very luck that my personal experience with the disease has been mild. I spent one week on hospital bed rest before being induced with my first; I was induced as soon as I was diagnostic with my second; and I was on "house rest" and labetalol from 35 weeks with my third. My highest blood pressures were in the 180s/100s, but I was lucky that those readings were only spikes, and for the most part I stayed in the 140s/90s range. My firstborn spent four days in the NICU because of high MgS04 levels, but my other two babies roomed in with me. They were all small - 5lbs 8oz; 6lbs, 14oz; and 5lbs, 12oz - but today they are all healthy.

How aware were you about pre-e before/during your pregnancy?

I had zero awareness or understanding of preeclampsia during my first pregnancy, and the information the doctors and nurses gave me in the hospital was contradictory and confusing. After my son was born and I read a lot more, I realized that I knew one woman who had suffered eclampsia and a stroke, but I didn't make the connection to preeclampsia until much later.


After my son was born I spent (at last count) over 4000 hours reading medical journals, other articles written by preeclampsia experts, hospital information websites, nursing flowsheets, and the Community Forums, trying to understand what had happened to me and my son. I was much better informed when my blood pressure went up in my second and third pregnancies! Reading is never a substitute for experience, so I also talked with my doctor a lot about her treatment plan for me during my pregnancies, and whenever I answer questions, I always tell people to check with their own doctors to confirm or refute what I've read!

What volunteer positions have you held? Why do you volunteer for the Preeclampsia Foundation?

I have been a moderator with the Preeclampsia Foundation Community Forums for over three years, and I've just accepted the Administrator / Team Lead position for the Forums.

I started volunteering because I know how scared and lost and confused I felt when I was hospitalized and induced in my first pregnancy. Preeclampsia is such a confusing disease and I didn't even know what questions to ask. The Forums is a place where women can share our experiences and what we've learned about the disease - what our doctors tell us, what the experts say in "Ask the Experts", and information from the main PF webpages, what we read in medical journals, and anything else we can find. The combined brainpower of all of us has helped me understand the disease and treatment so much better than I could ever learn on my own.

I have continued to volunteer because the Forums is much more than just educating one another and understanding the disease. Our members share information and support with mothers whose babies have died because of preeclampsia complications, mothers who are trying to conceive again after hypertensive pregnancies, and mothers who are pregnant again after a previous hypertensive pregnancy. We are also around to support fathers and grandmothers and grandfathers and aunts and uncles... We also talk about the emotional and physical aftereffects and future risks (like having double the risk of chronic heart disease later in life) following hypertensive pregnancies.

Preeclampsia touches so many aspects of our lives that I think it is incredibly valuable and vital to have a safe place where we can share good information and support one another.

What has been your most gratifying moment as a Foundation volunteer?

I am so glad any time I see Forum members continue to post because they've received support and information and want to do the same for others, and any time a member comes back to let us know that we've helped. Also, I've been using the Internet for a long time, and the Community Forums are one of the kindest and most supportive online communities I've ever seen. I've been very happy to be a part of that.

In a larger sense, I'm very gratified to see a changing attitude about preeclampsia on the Internet. When I first started reading about preeclampsia in 2003 I had a hard time finding good information about the disease.

 

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The Preeclampsia Foundation has already made a significant investment into health literacy research in 2009 and 2010, funding and working closely with top researchers and opinion leaders at Northwestern University in Chicago to develop an evidence-based patient education tool that will work with a broad range of patient populations today. That research study has been concluded and is ready to be tested on a wider audience. Research has shown that low health literacy is not necessarily correlated to low socio-economic conditions and that across many health conditions, patients may not have the resources to read or understand in-depth materials, and as a result are not adequately informed.

In addition, there are many education opportunities when pregnant women interact with a variety of care providers - childbirth educators, doulas, midwives, nurse-midwives and the traditional physicians and nurses they encounter in clinics, hospitals and medical offices. Each of those encounters is an opportunity to provide that woman with important information about the signs and symptoms of preeclampsia and to encourage her to take action if she has concerns. Throughout 2010, the Preeclampsia Foundation attended medical conferences and conducted an educational survey on what nurses, midwives and doulas provide in the way of preeclampsia patient education. The statistics, which will soon be published, show an alarming lack of regular preeclampsia education.

This year, thanks to a grant from the Beckman Coulter Foundation, the Preeclampsia Foundation will again be traveling to health care provider conferences and working to advocate for better prenatal preeclampsia education. The focus in 2011 will be on educating the educators on how to provide signs and symptoms information and include access to printed, audio and video materials. This also benefits the main audience, the patients themselves. Ultimately, our goal in reaching out to the extended medical provider community is that they will be providing the patients with accurate information in a form that is easy to understand and not overwhelming. We are looking for volunteers in the following cities: San Antonio, TX; Denver, CO; Dallas, TX; Boston, MA, so if you live there and would be interesting in volunteering to help at the exhibit for a few hours, please email Program Coordinator Laney Poye.

 

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May is Preeclampsia Awareness Month, as well as being the month where all of us celebrate the many maternal figures that have positively impacted our lives. As many of you can attest, motherhood is about more than a single day's recognition for the work that you lovingly (or at times begrudgingly!) do year-round for your family.

The same could be said about Preeclampsia Awareness month, which has always been about more than raising a banner or hosting a single event. Preeclampsia Awareness month is about taking action on behalf of a greater family: the global community of women and their families. For the Preeclampsia Foundation, May is not a culmination, but a beginning. It is a call to ACTION.

As such, May's newsletter is a call-to-action to make preeclampsia not just "that pregnancy thing," but a word that reminds people of the 10,000,000 women across the globe that are impacted, sometimes devastatingly, by preeclamptic pregnancies each year.

Read Janel Kovarik's account of sharing her preeclampsia experience with three generations of women, or find out how Promise Walks are delivering local awareness. Discover how healthcare providers are joining our call-to-action to make a difference.

It is also with sadness that we mourn the loss of a great preeclampsia researcher, Dr. Richard Levine, whose contributions to the understanding of the pathophysiology of preeclampsia will continue to live on through his research projects.

We also encourage you to take part in a variety of awareness events this month, including social media events with the March of Dimes, our blog button advertising campaign and a meaningful public art display that could come to your community.

Happy Mother's Day to all!

 

 

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Volunteer of the Month Spotlight - April 2011

Autumn Spear, Promise Walk Beat Editor

1. What was your experience with preeclampsia?
At 21 weeks into my first pregnancy with our daughter Sydney, I developed severe preeclampsia and HELLP syndrome and had no idea what was happening. I spent a week in the hospital trying to sort out what was happening at such an early stage in my pregnancy when preeclampsia is not typically seen. When my symptoms worsened, I was transferred to a high risk hospital and forced to deliver our stillborn daughter. It was a horrible and frightening experience. With the help of a maternal-fetal medicine specialist, we were able to deliver a healthy baby boy a year later though I still developed preeclampsia again at 36 weeks.

2. How aware were you about preeclampsia before or during your pregnancy?
I had never heard anything about preeclampsia and still did not understand what it was until I was researching it on my laptop in the hospital. My mother is an OB nurse and she was the one who suspected it might be preeclampsia and told me to go to the hospital.

3. Why do you volunteer for the Preeclampsia Foundation? What volunteer positions have you held?
I served as co-chair for Saving Grace in Seattle in 2010 and am now the Promise Walk Beat Editor. I volunteer because when I lost the most important thing in my life and had just gone through the most tragic event of my life, I was lost and scared and wanted answers. The Preeclampsia Foundation's website and message boards provded not only answers but hope and friendship. I found my way to the Promise Walk in San Diego two months after we lost Sydney and was so comforted by the embrace I felt from the PF community and the other women whose stories mirrored mine. I volunteer to give back and be that person for other women who so tragically have to go through the same experience.

4. What are your goals and dreams for your involvement with the Foundation?
My goal is that my contributions help facilitate the ongoing support the Foundation provides to women who have gone through losing a baby or parents and husbands who have just lost their daughters and wives. I hope that anyone who is looking for answers to what has happened to their family is always able to find those answers with our Foundation and find support about how to help treat it, what to look for and help others to be aware of the risks and symptoms so we can prevent such a horrible thing from happening to other women and babies.

5. What has been your most gratifying moment as a foundation volunteer?
Serving as Co-Chair for Saving Grace last year was not only one of the most gratifying moments of my life but working so hard on something and seeing it all come together and being in the company of so many others who are dedicated to finding answers to this disease and who understand what its like to go through such a tragedy brought me the biggest gift I could have ever asked for which was peace around Sydney's death. I will be forever grateful and will forever want to serve the Preeclampsia Foundation for giving me that gift.

 

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The Preeclampsia Registry

    The Preeclampsia Registry is a "Living Database" bringing together those affected, their family members, and researchers to advance knowledge and discover preventions and treatments for preeclampsia, HELLP syndrome, and related hypertensive disorders of pregnancy.

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