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Raising awareness in 2011 is no easy task.

A recent internet search of awareness efforts in May turned up 22 different causes, from asthma and allergy to stuttering awareness. As yet, the National Health Observances Calendar doesn't include Preeclampsia Awareness Month, although efforts are underway (with Congressional support) to add it.

So what can the Preeclampsia Foundation, an organization that recently celebrated its 10th birthday, learn from more established organizations and their campaigns?

Pink ribbons, red dresses, and yellow rubber bracelets immediately come to mind. Certain trends are prevalent in these successful awareness campaigns: a concerted public relations campaign, a celebrity spokesperson, partnerships with like-minded organizations, but most importantly, a clear message of the impact that a condition has on the American population.

Can an awareness "month" matter as we seek to raise the profile of our lesser-known, but equally worthy cause, amidst all the media noise - social and traditional - that surrounds us today? Raising awareness in 2011 may seem impossible, but we're trying - and succeeding - with your support.

Since its inception, the Foundation's motto has been "know the symptoms, trust yourself." This still rings true - and loudly - today. For a disease like preeclampsia that can present itself disguised as a number of less serious conditions, is hard to pronounce and is often called by many different names, a clear concerted message about the potential impact of the disorder and an understanding of the warning signs can literally be life-saving.

The first line of defense has to start with the pregnant woman and the people around her who care about her well-being. When armed with the proper information about relevant warning signs, she can be a forceful advocate for her own care, securing attention from care providers who respond diligently.

Hundreds of volunteers across the country are planning events to call attention to the disease. Twenty-three Promise Walks for Preeclampsia are being held nationwide with related activities such as guest speakers, appearances by media personalities, free blood pressure screenings, silent auctions, raffles, and memorial events. Preeclampsia awareness magnet "ribbons" are popping up on cars and a public art project has been created that will tour the country, beginning at Brown University in Rhode Island. Check out these events as well:

  • May 11 from 2-3 p.m. (EDT) - The Preeclampsia Foundation will be a featured guest on the March of Dimes' Twitter-based "Pregnancy Chat" an hour-long discussion about preeclampsia. To participate, register on Twitter and search for #pregnancychat during the event to participate.
  • Week of May 2 - NewsMomsNeed, the March of Dimes official blog will feature two members of the Preeclampsia Foundation as guest bloggers - one in English and one in Spanish - highlighting the unique challenges faced by preeclampsia survivors in planning for future pregnancies. The Spanish blog will be posted at blog.nacersano.org.
  • May 18-19, Brown University, Providence, Rhode Island - Debut of "Field of Cradles" public art project by artist Susannah Pabot.
  • Survivor Shirts, specially created to duplicate the Foundation's survivor pin design by artist Melissa Muir, and "awareness ribbon" car magnets are available via the online Marketplace. Look for special coverage about preeclampsia on Babycenter.com and other parenting blogs and websites.

But raising awareness is about more than a banner or a single event. Preeclampsia Awareness Month is about taking action. May is not a culmination, but a beginning. So, after you have absorbed the critical messages about preeclampsia, don't let the knowledge you have gained go to waste. See our "Engaging Walkers to Create Lifelong Supporters" for some tips on catalyzing your local group and taking further action.

Make 2011 a year of action for preeclampsia awareness.

 

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Many of our newsletter readers will participate in or support a Promise Walk for Preeclampsia this May and June. The Promise Walks are one of the biggest fundraisers that the Preeclampsia Foundation hosts: they not only generate funds for the Foundation, but raise awareness about the disease in local communities. For many people, a walk is their first experience with the Foundation - their first time connecting with our community and becoming aware of preeclampsia's devastating impact. This connection is an excellent opportunity to motivate Promise Walk attendees to become year-round Foundation supporters within their local community.

There are many ways you can help get your neighbors, friends and families involved after the Walk is over:

  • Encourage walkers to sign up for the Expectations newsletter to stay connected and motivated about our work; to see the impact their contributions are making.
  • Host an event to raise awareness or money for the Preeclampsia Foundation. 92% of Promise Walk donations go directly back into programs of the Foundation (research, patient education, and provider education).
  • Take awareness brochures to doctors' offices and clinics in your community. If you go for your regular gynecological exam (and you should!), there is no good reason at all for you to not take brochures to your doctor's office with the request that they make them available to patients.
  • Use social media and networking. It's one of the fastest ways to spread the word about preeclampsia. Join the cause on Facebook and educate your Facebook friends by inviting them to join the cause. Forward this newsletter to your contacts with a personal account of why the cause is so important to you.
  • Educate your community. You can fight preeclampsia in your own backyard by asking community leaders to provide education. Think of the leaders you know in your community - your spiritual leader, your government representative, your club president, the CEO of your company, the scout troop leader, the school principal. Organize a speaking opportunity to tell your story or invite a survivor to speak, closing with a call-to-action for the audience.
  • Personally thank our sponsors and donors. Don't wait until next Walk season to engage them. Show them your appreciation and inform them of the successful outcomes from the Walk and how you plan to build on that in the future. Help them understand that they are a partner in that effort.

For more information or help obtaining awareness-raising items to distribute please contact Angela Little.

 
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<p>Throughout the month of May, the Promise Walk for Preeclampsia has been raising awareness across the country: from Ohio to Florida, Minnesota to Texas, and California to Massachusetts, two dozen sites hosted walks with many of these being first time events. This year's walk season represents the largest effort to date with the most number of major cities and walkers participating, raising over $230,000.  </p>
<p>The National Promise Walk team ambitiously raised the national fundraising goal to $225,000 this year. The Promise Walk coordinators took this challenge and delivered. San Jose, Calif., raised more than $30,000 as a first time walk; San Diego, Irvine, Calif., and Davenport, Iowa, were just shy of $20,000 each, while Chicago raised over $26,000 at the second annual Walk-turned CARA (Chicago Area Runners Association) certified 5K walk/run. <br /> <br />All walks included guest speakers such as preeclampsia and HELLP syndrome survivors, researchers and health care providers. In Irvine, Dr. Allison Hill, of the Mommy Docs and the Oprah Winfrey Network television show Deliver Me, spoke about her own personal preeclampsia experience.</p>
<p>A special touch at many of the walks was a balloon, dove or butterfly release to honor both those who have survived and those lost to this disease.</p>
<p>Additional program elements at many of the sites included face painters, balloon makers, silent auctions, raffles, jump houses for kids, bake sales, breakfast burritos, donuts, goodie bags, a special memorial quilt and more. Wanting to make a good impression as a first-time race event, Chicago went all out for their runners, giving out more than a dozen finisher medals and hosting a Kid's Dash. Chicago event planners were eager to include a special award for the first place survivor. Little did they know that preeclampsia survivor Quincy Fleming would not only be the first survivor to finish but also the top finisher in her age group and the second fastest female competitor.<br /> <br />Four more cities have walks coming up in June and July. Indianapolis, Ind., and Wausau, Wisc., start off the month of June as new walk sites, while Denver, Colo., will hold the second 5K run/walk of the season at the end of the month. Boston, Mass., will then close the season with a late July walk, featuring Susannah Pabot's Field of Cradles public art exhibit honoring babies lost to preeclampsia.  </p>
<p>Help make strides and deliver hope: visit <a href="http://www.promisewalk.org">www.promisewalk.org</a> and join one of these walks or help them reach their individual goals. A big thanks to everyone who contributed to the success of the 2011 Promise Walk for Preeclampsia™!</p>

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On Wednesday, May 18, the Preeclampsia Foundation's Board Chairman Pat Dignan hosted a Saving Grace 2011 'Kickoff Reception' in midtown Manhattan. The purpose of the event was to gather New York City area constituents, share thoughts and ideas, and really build momentum toward the gala.

"Mission Accomplished!" announced Dignan. "We had a great turnout, despite a rainy and blustery Manhattan evening."

Attendees included area medical practitioners, corporate and individual sponsors, as well as leadership members from both the Preeclampsia Foundation and the Foundation for America's Blood Centers (FABC), since this year's Saving Grace Dinner Gala is a joint fundraiser, to benefit both foundations.

After Dignan welcomed the guests and delivered some opening remarks, a series of stellar presentations followed:

Lauren Larsen, President and Chief Ambassador of the FABC detailed how severe preeclampsia impacted her pregnancy, nearly resulting in her death. She articulated the need for blood products for many women in similar situations, as she herself required more than 200 pints of blood. Larsen did a splendid job highlighting the intersection between our respective causes, clearly articulating how 'Together, We Can Save Lives!'

Dr. Phyllis August
, Professor of Medicine in Obstetrics and Gynecology and Professor of Public Health at Weill Cornell Medical College and also a member of the Preeclampsia Foundation's Medical Advisory Board, provided an overview of the disease, the elusiveness of identifying both cause and cure, and the importance of our collective vigilance in promoting awareness, education and funding research.

Eleni Tsigas, Executive Director of the Preeclampsia Foundation, provided a brief history of the Preeclampsia Foundation, and a comprehensive overview of the Saving Grace dinner gala fundraiser to-date, including the cities to which it and we have traveled since its inception in the Fall of 2005 in Minneapolis, Minn. Tsigas chronicled the success of the event, the proceeds it has raised, the people, programs and services it has impacted, and in turn, the participants who have left a lasting impression upon us.

Roy Davis, President of Johnson & Johnson Development Corporation and Vice Chairman of Saving Grace 2011, highlighted the huge role played by both organizations in the general area of maternal health, which is the reason for his past and current support, as well as that of Johnson & Johnson as a whole. Roy conveyed the excitement associated with the event coming to Manhattan, and challenged us all to take full advantage of the platform we have this fall, to reach a broad and diverse audience, and raise substantial proceeds.

Overall the kick-off reception was a wonderful evening, very rewarding to see the supportive turnout, and to experience the momentum we are building toward Saving Grace 2011. The Foundation for America's Blood Centers and the Preeclampsia Foundation hope to see you all Saturday evening November 12 in the Grand Ballroom of the Hilton New York. For more information, please visit www.savinggrace.preeclampsia.org.

 
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Amy Robbins-Wilson, the lullaby singer from Maine who wrote three songs for the “I Gave You Words”/Field of Cradles art exhibit, will be singing for participants of the Promise Walk for Preeclampsia™ in South Boston on Sunday, July 24th. Her performance will be a highlight for both children and adults present at the walk, and will be dedicated to the many babies lost each year, including the babies memorialized in the Field of Cradles exhibit, displayed at this year’s Promise Walk.

The Field of Cradles display is a poignant reminder to all that pass by, a grassy field of empty cradles, each representing a baby that has lost his or her life to preeclampsia. Inside each cradle lies a blanket with a poem on it written to and for that child, while Robbins-Wilson’s gentle lullabies play in the background.

Deeply moved by her involvement with the Field of Cradles exhibit and the words of the families who courageously shared their love, their hopes and their grief, Robbins-Wilson has recently created an entire album of songs entitled “Angel Baby Lullabies,” which is dedicated to parents who have lost a baby.

"I was drawn to this project as soon as Susannah contacted me,” Robbins-Wilson explained. “Our son was hospitalized and in critical condition twice before he was two. While we were blessed to be able to bring our son to health and home, I was awakened to the fact that it is not always so."

“Music can speak to our hearts in a way that mere words do not,” she emphasized.

Robbins-Wilson recently performed songs from her album to benefit the Empty Arms Healthcare Charities in Bangor, Maine. Audience members were overwhelmed by the beauty of the music with one mother commenting that it helped her “cry the tears she needed to cry.”

Robbins-Wilson has donated the unlimited use of three of the songs to support the Field of Cradles art exhibit and will also contribute a portion of the album proceeds to charities that support mothers and babies including the Preeclampsia Foundation. As her way of saying thank you to the Preeclampsia Foundation and to support others who have lost a child, she is making the entire collection of music available to listen to for free until the end of July.

Robbins-Wilson concludes by saying, “It is my prayer that Angel Baby Lullabies will provide comfort to all parents who have lost a child.”

Promise Walk participants look forward to hearing Robbins-Wilson sing at the walk and thanking her in person for donating her time and beautiful voice to such an emotionally powerful cause.

 
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The live auction at Saving Grace - A Night of Hope is lively and energizing. Shrieks of laughter and good natured competition inspire the audience to interact and bid high, receiving a fun and exciting trip, package or unique experience in return. These prizes are supplied by the overwhelming generosity and connections of our auction donors...individuals and businesses like you!

At this year's New York City Saving Grace on November 12, we plan to again include some fantastic prizes, with proceeds going to fund research and education programs of the Preeclampsia Foundation and the Foundation for America's Blood Centers, but we need your help! The Manhattan planning committee wants to outdo all previous events and is looking for charming live auction items for donation: trips, sports packages, luxury hotel and restaurant accommodations, jewelry, original artwork, are all popular prizes that generate great excitement and fill the room with a contagious buzz.

Early submissions are recommended to receive recognition in the gala's dinner journal. Individual items, or multi-item packages, should have a $1000 minimum value. If you or your business would like to make an auction item contribution, please download our auction donation card, or email event planner Carla Capone.

 
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Some of the most important participants at the Promise Walks for Preeclampsia are healthcare providers who come out to support the Foundation. Many are community physicians and nurses who treat preeclampsia on a regular basis. The Promise Walk is an annual event held in numerous cities that allows the preeclampsia community to come together and mourn their losses, celebrate their hopes, and work together toward the common goal of raising money to fund research and create awareness.

Many Promise Walks invite healthcare providers to speak about their own professional experience with preeclampsia. That provider brings their own professional validation to the need for awareness and research, while giving attendees hope, knowing that there are medical professionals working diligently to solve the "preeclampsia puzzle."

So what causes these health care providers to be so passionate for the preeclampsia cause and to join our efforts at the Promise Walks? To provide some perspective, beat editor Autumn Spear sat down with two provider Promise Walk attendees, Dr. Doug Woelkers of San Diego, Calif. and Dr. Jim Wilk of Denver, Colo.

Dr. Wilk, an avid runner, was searching for his next race when he came across a listing for the Denver Promise Walk and thought, "Why, that sounds right up my alley -- a 5K and a way to raise money for preeclampsia!" He registered and started a team called "Friends of Rose Babies," enlisting the support of doctors and nurses at Rose Hospital's obstetrical unit.

Dr. Woelkers, a regular San Diego Promise Walk attendee, explained his involvement stemmed from a desire to "show women who suffered through a pregnancy with preeclampsia that the doctors, nurses, and residents at the University of California San Diego care about them, and are working to find a cure and a prevention."

Both physicians commented that their favorite part of the Promise Walks is the sharing of emotions and the overwhelming support of the community.

"There is a lot of emotion at the event," said Dr. Wilk, "particularly in the stories of the preeclampsia survivors and when viewing the memorial quilt for those who did not survive. It was very, very moving. This was an event to validate and celebrate and commemorate their -- and my -- experiences and feelings in dealing with preeclampsia."

Dr. Woelkers connected with the positive emotion as well: "I like to hear the cheers of support that the crowd always gives for the mom who is relating her story of illness. They are usually complete strangers, but yet everyone acts like family."

When asked why the Foundation's mission is so important, Dr. Woelkers responded, "From my perspective as a perinatologist, raising awareness about preeclampsia is like finding a new test to predict the disease. If more women and partners know about the disease, then they may seek help earlier when things start to seem wrong."

Dr. Wilk agreed, "I treat pregnant women every single working day and when I mention preeclampsia there is always at least one patient who asks, 'What's preeclampsia?' And when pregnant women have never even heard of a common illness that could kill them or their baby, that's a problem."

Health care providers like Dr. Wilk and Dr. Woelkers give their valuable time and compassion to our walks. If you know a healthcare provider who would be interested in participating in next year's walk near you, please contact Becky Sloan at becky.sloan@preeclampsia.org.

 
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Our seventh annual Saving Grace dinner gala fundraiser took place in Manhattan on the evening of Saturday, November 12. It was simply a wonderful evening, replete with raw emotion, inspirational stories, hope and gratitude. Together with The Foundation for America's Blood Centers, another worthy charity dedicated to saving the lives of mothers and babies, we reached a broad and extremely engaged audience of almost 500 guests. With the support of so many individuals and our event sponsors - Johnson & Johnson, Ortho Clinical Diagnostics, Merck, Abbott and many others - we grossed nearly $550,000 to support the vital missions of our organizations!

Our theme this year was expanded from our traditional 'A Night of Hope' to 'A Night of Hope and Gratitude,' to reflect the hope we derive from, and the gratitude we express toward, our esteemed medical researchers and practitioners and our life-saving blood donors. We were honored to hear a keynote address from Dr. James N. Martin, Jr., President of the American College of Obstetrics & Gynecologists (ACOG). In his remarks, Martin emphasized the need to generate more research about preeclampsia, as well as to translate existing research into actual clinical practice, both priorities for his ACOG presidency. This drive for increased research and improving patient care was also reflected in the honoring of four New York area physicians, who have shown exemplary dedication to maternal-fetal healthcare, including Drs. Phyllis August, Mary E. D'Alton, Andrei Rebarber, and Daniel Skupski.

I also want to emphasize the point that our volunteer community (all of you!) instills hope for the future through your varied projects, initiatives and stalwart dedication to our mission and values. For this, I want to express my deep and most sincere gratitude. Thank you! And special thanks and congratulations to the recipient of the 2011 Preeclampsia Foundation Hope Award for Volunteer of the Year Becky Sloan, for her exceptional work as National Walk Director of the Promise Walk for Preeclampsia!

Our Mistress of Ceremonies was a familiar face in tri-state broadcast news. Diana Williams, an award-winning reporter and anchor for WABC-TV Eyewitness News, brought a great energy and even some relevant "breaking news" of her own. Attendees enjoyed musical performances by the award-winning New Jersey Youth Chorus and Jim Papoulis, a well-known musical composer and conductor. Their performance was highlighted by the evening's theme song, composed by Mr. Papoulis and fittingly titled "Saving Grace."

 

The collective hard work of these individuals and volunteers like all of you has helped to make the Preeclampsia Foundation what it is today: (1) a vital information and educational resource for those women affected by hypertensive disorders of pregnancy, and their caregivers, and (2) a sponsor and funding source for innovative research into the cause and cure of the disease.

The very best to you and your families this holiday season!

 

 

 

 

 

Pat Dignan

Chairman, Board of Directors

 

 

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In the words of 17th century English poet John Donne, "No man is an island"... and in the world of fundraising, this is doubly true. The incredible success of the Promise Walks each year is due in no small part to the ability of local walk coordinators and participants to gather their friends and families together and spread the infectious hope for the future that is at the fundamental core of the Promise Walk.

But how does a walk move from helping the Foundation fund a single local education campaign (around $2,000) all the way to funding an entire Vision Research Grant ($25,000)? The answer is the passion and drive of team work! So if you haven't already, start a team and read the following tips on making a big difference:

1) Have a Plan. Set a reasonable goal and make a list of people who would potentially support your efforts. For instance, check out this great formula to raise $500 in a single week, done just by working with the relationships you already have in place. Invite friends and family not just to give, but to join your team and "set a coin can" on their desk at work!

2) Relationships Matter! While we have a great cause (few people can say no to helping moms and babies!), people are giving money not just to the cause, but because they know and support you, and therefore support what matters to you. Keep your donors involved beyond the initial thank you, through a quick email letting them know that their donation helped you reach your personal goal, or telling them exactly what their $25 or $50 donation means not just to the Foundation's mission, but to you personally.

3) Involvement Goes Beyond Giving. We all know that times are tough, but we also give to the causes and the people that matter most to us. Encourage your donors not just to give dollars, but register for the walk and form a team, donating their TIME to the cause.

4) Lead by Example. Don't be afraid to make a stretch pledge, and encourage your contacts to match this goal, and see who can raise it first. Whether it is $50, or $500, competition is a great motivator.

You are an important part of the ultimate team - the Preeclampsia Foundation - comprised of others like you making strides and delivering hope for moms and babies around the world.

 

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The October 2011 issue of Expectations (featuring patient-centered care month) highlighted two powerful, silver-screen accounts of parents confronted with the unthinkable: a child's health crisis with no known cure leading doctors to tell them "there is nothing more we can do." Those simple words - and the prospect that there was no hope - prompted these every-day parents to take on the most important "projects" of their lives: saving the lives of their children.

These extreme examples of patient advocacy provide a humbling reminder of how important our own voices - and understanding of our conditions - are in our individual health care (during pregnancy and otherwise).

In thinking about patient advocacy in relation to my own pregnancy, I am ashamed I didn't ask more questions when I was ordered to take my first (and then second!) 24-hour urine test. I didn't know that a 24-hour urine test wasn't routine, and my doctor was certainly not offering up any unsolicited explanation. I was too shell-shocked to ask any intelligent questions when she took my blood pressure a few days after I returned my second urine sample and simply told me I had "earned a vacation in the hospital." In my recollection - and that of my entire family, who shared in all the details of my pregnancy and have since been grilled on this subject - there was no mention of the word preeclampsia or HELLP syndrome until much later.

Those were the opportunities I missed. It wasn't until weeks later when I had come out of a coma and begun recovering from multiple organ failure that I saw a glimmer of my ability to advocate for myself. Growing tired of the feeding tube that was giving me sustenance (and a very obvious indication and reminder of my less-than-hopeful situation), I became committed to getting it out. I lobbied my doctors for a follow-up swallow test in the hopes that this would be the one that I would pass. I did, the feeding tube was removed, and it wasn't much longer until I was home, caring for my baby daughter, and back to a "normal life." Ultimately it was an important milestone representing the first step I could take toward setting my own recovery process.

CNN medical reporter and author Elizabeth Cohen advocates for making sure we get our business "DUN" when at the doctor's office: find out our diagnosis, understand the plan to make us better, and learn the next steps toward feeling better. She recommends the following simple questions to get the ball rolling and to gain clarity on our personal health status:

  • What's my diagnosis?
  • Which drugs should I take, if any?
  • Are there any other treatments or instructions?
  • Do I need a specialist? If so, do you have a specific recommendation?
  • How long should I wait for this treatment to work?
  • If my problem doesn't get better in that time, what should I do?
  • Am I awaiting any test results? If so, when are they due back in your office?


And, during pregnancy, the following questions may be important to ask:

  • What was my blood pressure?
  • How much protein was in my urine today?
  • Does my weight gain over the last few weeks seem okay?
  • What other symptoms should I be looking out for?

I asked none of these questions and didn't appreciate enough how the age of managed care, rushed doctor's visits, and healthcare reform might be affecting my pregnancy. It wasn't until much later when I needed hope that I began advocating for myself. Now more than ever, though, we all need to prepare to work with our doctors to get the best care we can - and to have hope that there can be a positive outcome.

 
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The Promise Walk for Preeclampsia means something unique to each participant across the country... but this year for one young preeclampsia survivor, it means getting to see her artwork impact thousands!

Mya Detweiler, age 10, and her mother Dawn are no strangers to the Preeclampsia Foundation, or the Promise Walk. After experiencing severe preeclampsia and a harrowing premature delivery, Dawn turned her passion for the cause into action as a lead volunteer for the Foundation, including coordinating her own local Pennsylvania Promise Walk since the inaugural walks in 2005.

"Since she was little, Mya's been helping me stuff goodie bags and hand out raffle baskets for various fundraisers to support the Foundation," said Dawn. "When Mya found out about the t-shirt design contest, she was eager to participate, and this contest was a new way for her to get involved."

Mya's design incorporates the many different types of people who help the Foundation "Make Strides and Deliver Hope," and will be featured on all of the 2012 Promise Walk shirts.

"I wanted to show all the different people that go to the Promise Walk to help, like dads and family members and friends," Mya explained. "My mom also helped me add a butterfly for people who walk because they remember moms and babies that they miss." She was surprised and excited to learn that she had won the design contest out of more than a dozen design contenders.

"The design reflects not just the wonderful community that the Promise Walk brings together each year - people who walk, give and learn," said executive director Eleni Tsigas, "but it also represents the promise we make to mothers around the world that they will have the chance to watch their own children grow and develop creativity and compassion for others."

"I just thought it would be a neat chance for us to be creative together, but it's turned out to be a very special experience," Dawn added. "A valuable lesson in how being dedicated to a cause and making a seemingly small contribution can really matter... and be fun at the same time!"

Be sure to register today at www.promisewalk.org for a walk near you to get your own 2012 Promise Walk t-shirt! And start thinking about your ideas for next year's design contest.

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new-headerAs the temperatures continue to rise this summer, we look south of the border to a grandmother making a difference all the way from the beaches of the Caribbean. For years Sandy Coder has collected sea glass from the beaches near her house in Mexico. After lots of practice drilling tiny holes in the glass, she created the first "Eva's Angel" in memory of her granddaughter that was lost prematurely at 22 weeks due to preeclampsia and HELLP in 2007 (read Eva's story here).

 

Coder said, "When I am working on drilling the holes or putting these together, it is a constant reminder of the huge toll preeclampsia takes on a family." All of the materials are donated by their family and the proceeds of each Eva's Angel sold goes to the Preeclampsia Foundation. This year, Eva's Angels were available for purchase at the Rochester, Minn. Promise Walk, where Coder's daughter Eliza, Eva's mother lives. For more information on ordering an Eva's Angel, please contact Sandy Coder.

 

new-headerGrandmother Cynthia Streets also found a way to make a difference and remember her granddaughter, Madi Rae: a memorial bowl-a-thon in Rome, New York on June 17 to benefit the Foundation. Madi Rae was born 16 weeks early on June 30, 2011 and passed away on July 2, 2011 (read Madi's story here).

 

 

"I wanted to do something, anything, hoping to make a difference to help someone else," said Streets. Their family plans on making the Bowl-a-Thon an annual tradition to celebrate the short life and long legacy of Madi Rae. "I am very proud of it, and next year we will do so much better!"

 

The impact of preeclampsia on grandparents, no matter the outcome, is often overlooked. They stand by our bedsides when we are sick, hold our hands when the news isn't good and usually are the best cheerleaders and supporters that we have. They feel the pain of their own children's sadness, plus their own grief of losing a grandchild. Thank you to all the grandparents out there that continue to make a difference!

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In June, Americans celebrate Father's Day, a holiday that can be bittersweet for preeclampsia patients and their families, many of whom have experienced recent and past losses or endured harrowing scares. The Foundation often describes survivors of preeclampsia as members of "the Silent Club," for the way that such a devastating pregnancy experience can be both silent and isolating. Nevertheless, there is a group whose voice we hear far less when discussing our pregnancy experiences: our husbands, significant others and the fathers and grandfathers of our children.

These men often become the "silent-er" club, watching helplessly and recovering quietly as the blessed event they expected their wives' pregnancies to be turns out quite different. But many of them go on to stand next to us when we throw ourselves into volunteering for the cause, contributing their own expertise and perspective, and even stepping up to become leaders themselves.

So this month, we recognize the impact all those dads and granddads have had on the Preeclampsia Foundation over the past 12 years: whether they are volunteering, sharing their story or wondering how to find information. To all the dads out there who have given countless hours to the work of this Foundation, we give a resounding thanks for the impact you have had.

 

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<p><span class="userContent">Pennsylvania State Sen. Bob Mensch (R - 24th District) advocates for preeclampsia awareness and writes about his experience with the Lehigh Valley Promise Walk.</span></p>
<p><span class="userContent"><a href="http://www.delcotimes.com/articles/2013/06/26/opinion/doc51cab5fc9c10a418784058.txt?viewmode=default">Read his guest column</a> in the Delaware County DAILY TIMES.<br /></span></p>

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This year's Saving Grace-A Night of Hope is only 10 days away -- on Friday, October 18, from 6:00 to 10:00 pm, in Iowa City, Iowa. It will occur immediately after this year's day-long Continuing Medical Education (CME) event, held in conjunction with the University of Iowa Hospitals and Clinics.

This year, our signature fall fundraising event will feature food tastings at multiple food and beverage stations donated by local chefs and served by local Iowa City celebrities. Midway through the evening, attendees will be seated to enjoy coffee and desserts during a special program, including featured entertainment and the annual Foundation award presentations.

Entertainment will include comedian John Bush and the Nova Singers, a 20-voice ensemble with a nation-wide reputation for expressiveness, virtuosity and innovative programming.

Purchase your tickets online now: $50 (standard) or $100 (VIP), and meet us in Iowa on October 18 for a memorable, meaningful evening.

 

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By Quincy Fleming ~ Physical activity is something that my husband and I have always enjoyed, so it is only natural that my children have also gravitated towards endurance sports. It takes a lot of time and creative scheduling to get workouts in, but instead of trying to keep the workouts and family time separate, we find all kinds of crazy ways to include our two children. In fact, my husband and I are currently training for an Iron Distance Triathlon. Why, you might ask?

My children and I are preeclampsia survivors. And while we are lucky to have escaped with our lives, our health, our sanity, I know that we are at a heightened risk for heart disease, diabetes, obesity. It seems every lifestyle disease out there carries an extra punch for us. So we asked ourselves: why not embrace healthy lifestyles and exercise as part of our everyday family time?

Unfortunately, because the life that includes raising small children is demanding and time consuming, physical activity often becomes viewed as an adult selfishness to be discarded in favor of doing "more important" things for our children. But taking care of yourself IS doing something for the children. And more importantly, is setting an example for your children.

So from our active family to yours, here are some strategies to get the whole family moving:

1. Go somewhere fun for the kids and have Mommy and Daddy take turns getting in a workout. Summers at the beach is a great opportunity: one of us will start out with the kids building sandcastles and playing in the waves, while the other one goes for a swim, bike, or run, then switch. And be sure to remember to spend some time together, too!

2. Plan a day trip or vacation around physical activity. I am not suggesting you take the kids biking in the Alps here. (Actually, I am... that would be awesome! Can I come along?) But you could definitely tour a place by walking or biking, or, incorporating physical activities into your trip. I am all for relaxing. And eating. But I try to keep it in smaller proportion to moving.

3. Move together.
Take the stairs, park far away, walk somewhere you would normally drive. Put on some music and dance. Go to the school playground and shoot some hoops. Or kick it with a soccer ball. Toss a football around. Play tag. Roll down a hill. Take a flashlight out and do a nighttime walk. Have underwater tea parties at the pool. It doesn't have to be earth shattering or a monster workout. Just do something that makes you move more than you normally would: because it beats sitting on the couch!

4. Compete. Play games with your kids and don't always let them win. Encourage them to try to be the best at something. Kids are awesomely egotistical and competitive. They are actually kind of fun and funny this way. Enjoy it, feed off of it a bit, because trust me, they will LOVE it!

5. Sign up. Most kids can run/walk a 5k...so can most adults. If they are too little to run/walk, they can ride in a stroller... so why not sign the family up for a family race? Many events have themes, support and post-race activities and are geared towards families (including your local Promise Walk for Preeclampsia!). Even if your 7 year old complained the whole time, he will proudly proclaim he has run a 5k once the race is over. And for the rest of their lives, they will know they can do it and will be much more likely to do it again.

I'm not encouraging everyone to run out and sign up for some crazy endurance event (leave that to me). But I am encouraging you all to get out with your families and MOVE a little bit. Walk, run, swim, bowl, dance, jump, climb, whatever gets you active. And whatever it is, do it together!

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In April, a New York Times article cited a study from the medical journal The Lancet that indicated for the first time in decades, researchers are seeing a significant drop worldwide in the number of women dying each year from pregnancy and childbirth, to about 342,900 in 2008 from 526,300 in 1980.

Several reasons were noted for the improvement: lower pregnancy rates in some countries; higher income, which improves nutrition and access to health care; more education for women; and the increasing availability of "skilled attendants" - people with some medical training - to help women give birth. Improvements in large countries like India and China helped to drive down the overall death rates.

 

Other groups disagree with the rosy outlook and argue that much work remains to be done. After all, over 340,000 women still die each year because of pregnancy-related causes. This is, in our assessment, a major indication that efforts need to continue and, in some areas, intensify.

 

A January 2010 Sentinel Report from the Joint Commission stated that current trends and evidence suggest that maternal mortality rates may be increasing in the US. The most common preventable errors include failure to adequately control blood pressure in hypertensive women, failure to adequately diagnose and treat pulmonary edema in women with preeclampsia and two more causes related to Cesarean section deliveries. The report goes on to explain that the maternal deaths are really only the tip of the iceberg and that behind every death are scores of “near misses” that warrant equal scrutiny.

In March, Amnesty International released their shattering report, Deadly Delivery. According to their analysis of US statistics, maternal mortality ratios have increased from 6.6 deaths per 100,000 live births in 1987 to 13.3 deaths per 100,000 live births in 2006. The United States spends more on health care than any other country in the world, and the highest percentage of those dollars (about $86 billion) is spent on maternity care; yet, two to three American women die per day of pregnancy-related causes, making women in the United States - particularly minorities - more likely than their counterparts in 40 other countries to die having a baby. Significant media coverage resulted from the publication of Deadly Delivery including CNN, the Washington Post, and Time magazine.

In his opening remarks at a Congressional briefing, Dr. Larry Cox, the executive director of Amnesty International U.S.A., called the current situation "a human rights crisis" and called for the establishment of a federal office of maternal health, among other measures. So which is it - are maternal mortality rates improving as The Lancet study suggests, or are the risks associated with pregnancy in a state of "crisis" in this country, as Deadly Delivery suggests?


Over the past decade, we have worked with the Centers for Disease Control and Prevention (CDC) to try to get a handle on the role of preeclampsia and related disorders on the maternal mortality rate in this country and one thing is quite clear: maternal death rates are severely under-reported in the US due to huge fluctuations in how individual states report maternal deaths and their causes.

Often a maternal death is categorized based on the downstream impact (or "sequela" in medical terms) of preeclampsia. For instance, cause of death may be reported as disseminated intravascular coagulation (DIC), which means the woman bled to death; however, the precipitating event was development of HELLP syndrome, a variant of preeclampsia. And, in very few instances are the maternal death cases aggregated and examined to identify common points of failure in diagnosis or care which could provide a benchmark for improving health care practices.

Our experience was validated by the Amnesty International report, although we know of at least one instance where their report data was in error. Kentucky, noted as a state that is 22nd in maternal mortality and which the report indicates has no accountability practices in place, actually is one of the few states in the country that has implemented a stringent reporting and review system.

 

According to Dr. Stanley Gall, chair of the state's Maternal Mortality Committee, Kentucky has a pregnancy checkbox on its Death Certificate, has a Maternal Mortality Committee that reviews every maternal death that occurs in the state, publishes its findings, and conducts annual postgraduate courses to alert and remind the obstetricians of the medical events that are occurring.


In the year ahead, the Preeclampsia Foundation will be calling attention to the lack of reliable data and the impact it has on gaining a greater understanding of risks associated with preeclampsia. We applaud the progress made in Kentucky and hope to spearhead similar advocacy efforts in other states. If you haven’t already, please take our Advocacy survey to help us set our priorities for the coming years.

 

The truth is, any mom dying to give birth is not okay. . . not in an industrialized country with ample resources like the United States, nor in other lands where limited resources often mean pregnancy is a death sentence.

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Posted on in Letter from the Executive Director

It is fitting that November is the month of thanks-giving. At the Preeclampsia Foundation, we have many people and much to be thankful for, starting with the launch of our new website. If you haven't yet, please visit our new home. Same address - www.preeclampsia.org - but with a complete renovation that allows us to include more content and address our ever-expanding mission into areas such as advocacy, international support, and research communications.

The team including Dan Verakis, Amit Jesani and a host of developers literally spanning the globe, are to be commended for leading us through this complex process. Please bare with us as we will inevitably hit some unforeseen snags in our database or in the website itself. Rest assured, security and your privacy have not nor will ever be compromised. Your trust in us is paramount.

Our trusted science writers, including Caryn Rogers, Heather Curtis and several members of our Medical Board ensure that the latest, accurate health information is online and we thank them for their valuable contributions. We take our position as the #1 source of preeclampsia information on the internet very seriously, and will continue to provide patient information that is medically accurate and helpful. Please let us know how we are doing to meet your needs.


2010 has been a year of progress and reflection for the Foundation, as we celebrate our 10th anniversary, culminating at Saving Grace - A Night of Hope in Seattle on Nov. 6. We are so thankful for the extraordinary efforts put forth by co-chairs Bonnie Rosenbloom and Autumn Spear. The event promises to be quite inspiring and entertaining. There, a beautiful book, Preeclampsia: A Decade of Perspective, will be debuted and would not have been possible without the tenacity of Jill Siegel, Laney Poye, Marshall Lindheimer, dozens of writers and contributors, Ruder Finn (London), DrinkerBiddle (Washington, DC), and the beautiful graphic design services donated by Hannah Wygal of Monster Design. This 40-page publication serves as not only a compendium of our milestones, but as a call-to-action to health care professionals, patients, researchers, policymakers and others to work together on our ambitious but life-saving mission. The future we envision is within our grasp.

One of the most exciting aspects of our recent participation at the ISSHP World Congress in Melbourne, Australia, was receiving the overwhelming support of these world leaders in preeclampsia. Our collective call-to-action is captured in this Proclamation and will further materialize as we work toward a Global Preeclampsia Awareness Day in Geneva in 2012. I'll report more on our successes at the ISSHP World Congress in the coming month.

We are also so thankful for the many families who look for creative and challenging opportunities to raise awareness and funding, like Laura Dale who is tackling a half marathon effort!

We are grateful for your stories - stories that inspire, help us feel a little less alone, and remind us that amidst tragedy, life can be reborn. Renee Feagan found her life completely changed after her preeclamptic pregnancy and honored us with the sharing of that experience.

So much to be thankful for, not the least of which that none of this would be possible without your support. Please take a moment to experience our donate button on the new website and share your feelings of gratitude with us, too!


Sincerely,


Eleni Tsigas
Executive Director

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The end of the year always brings with it the joys and blessings (and sometimes challenges) of the holiday season, the nostalgia of closing out another year, and the enthusiasm of looking forward to a new year of anticipated goals.  For the Preeclampsia Foundation, as we close out 2010, we close the door on our first decade as THE patient advocacy organization fighting to end the devastating impact of preeclampsia. It has been a very full ten years, beginning with the tumultuous first steps of any start-up organization and moving into the more recent years of growth and success. Last month, we published "Preeclampsia: A Decade of Perspective | Building a Global Call to Action".  This 40-page publication captured our milestones as we celebrated our 10th anniversary, reported on the state of preeclampsia, and suggested a call-to-action for our partners, allies and supporters for the next decade. Included was a Proclamation signed by world health leaders representing 32 nations that called for solidarity in six action areas.


Developing this report was, as I stated in the Introduction, a humbling and eye-opening experience. Humbling to realize how far we’ve come in ten short years – the programs we’ve produced in research, education, awareness and advocacy, but also how vast the road ahead still lies in the US and especially in low- and middle-income countries. We plan to continue to play a key role in filling that gap and driving awareness of a global health problem so devastating to mothers, babies and families. We invite you to join us on this life-changing journey.

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<p>Who can stay "heart healthy" when they're trapped inside looking at a blanket of snow? Hey, unplug the snow blower and get out your shovel... or better yet, grab a sled and revel in it! In all seriousness, we wish our friends across the preeclampsia universe warm cups of hot cocoa. And for those in the warmer climes, yours truly included, there will be no boasting about too much sunshine!<br /> <br />Thanks to St. Valentine's Day, February has been embued with images of hearts and emotions. The <a href="http://www.goredforwomen.org" target="_blank">women's heart movement</a> has adopted the month and we would be wise to pay heed to those healthy heart messages. After all, preeclampsia survivors - particularly repeat offenders - have double the risk of developing heart disease in the next 5 to 15 years of our lives. If your physician hasn't asked you about your pregnancy history, make sure you let her or him know all about your pregnancies - the good, the bad and the ugly. It matters. See our newest brochure <a href="http://www.preeclampsia.org/market-place" target="_blank">Preeclampsia &amp; Heart Disease</a> to learn more about how significant your pregnancy history is to your future heart health. And if you were waiting for the right reason to lose weight, eat right and start exercising and haven't found the mirror shouting at you, then look at your family and tell yourself that they are worth it.<br /> <br />As for the emotions related to February, we're debuting a new feature this month - <a href="/forum/viewtopic.php?f=14&amp;t=41702" target="_blank">Writing Heals</a>. So many preeclampsia survivors have found solice, meaning, analysis and even life-long missions through the writing process. Following my own perinatal loss, I stumbled upon an all-day workshop called "Writing Through Loss" that gently and yet purposefully led me through one of the most healing parts of my grief journey. Ty Allen explains this new project and leads us to a special spot in our<a href="/forum/viewtopic.php?f=14&amp;t=41702" target="_blank"> Community Forum</a> to post your poems, essays or freeform thoughts, all part of the healing process.<br /> <br />This past month we were saddened by another mother lost to preeclampsia. <a href="http://www.knoxnews.com/news/2011/jan/29/raising-ruby-up/" target="_blank">Kristin Coker</a> in Tennessee, died of post-partum eclampsia after giving birth to her beautiful little girl Ruby Evelyn. If that makes you sad, or more appropriately, mad, please take a few minutes to fill out our <a href="http://www.zoomerang.com/Survey/WEB22BQVRAJL9T" target="_blank">Advocacy Survey</a>. What's the connection? Among the many issues we must grapple with is the lack of accurate data about maternal and perinatal deaths in the US. We know these numbers are under-reported. A very few states have tackled this problem, and then gone beyond to not just ask "How many are really dying?" but "Why?" and "What can we do about it?" We, as an organization of emboldened patients, must also ask those and other equally challenging questions. Answers from our Advocacy survey will help us allocate resources and attention to the most important issues that matter to you. Please let us hear your voice.<br /> <br />With that, warm up the hot chocolate, shovel a few more feet of snow, love your family and luxuriate in a moment of knowing that there's a huge "family" who cares deeply about your concerns and experiences with preeclampsia. And, as always, I'd love to hear your feedback. How did you use writing or any other techniques to heal from your preeclampsia experience?</p>

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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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