1. What was your experience with preeclampsia?

I developed HELLP Syndrome in 2009. Not knowing the symptoms of HELLP delayed my response to getting help faster. I went to the ER after three days of right upper quadrant pain (which I was told by the doctor on call that it was probably my gall bladder even though I was on bed rest for high blood pressure), difficulty breathing, and a sense of just not feeling well. I was told by the Labor and Delivery nurse I had made it just in time. When I arrived my platelets were dangerously low, my liver was enlarged and my blood pressure was high. They feared I was going to bleed out during delivery and prepped me for a transfusion. There is no scarier feeling than feeling like you might die during what is supposed to be the happiest time in your life. I delivered my son, Cooper, at 36 weeks. He was only 4lbs 13 oz. Although he was tiny and his platelets were low, he miraculously did not have to go into the NICU. We were able to come home after 5 days in the hospital.

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

Before getting pregnant, I had heard the word "preeclampsia" but did not know the severity of the disease. At 34 weeks, I was put on bed rest for "pregnancy induced hypertension." The word preeclampsia was briefly mentioned by the doctor, but not explained. I remember reading a small section of information in my pregnancy book on preeclampsia and HELLP Syndrome. I wish I would have known the signs and symptoms sooner as I would have gotten help faster.

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

After having a traumatic birthing experience, I developed Post-Partum Depression. I felt so alone and felt like no one understood what I was going through. In 2011, I attended my first Promise Walk in Raleigh, NC, and for the first time in two years I felt at peace. Even though I was meeting other women like myself for the first time, I felt like we had a special bond. I left the walk knowing that I wanted to start a Promise Walk in my hometown, Charlotte, NC. I helped co-coordinate the first walk in Charlotte this past May. I have recently been appointed the Mid-Atlantic Regional Coach for the Promise Walks and plan to coordinate the 2013 Charlotte Promise Walk.

4. What are your goals and dreams for your involvement with the Foundation?

I want to spread awareness of this deadly disease to not only women, but their families, friends, and to future health care providers. I was able to get the local high school's HOSA (Health Occupations Students of America) club to volunteer. The club's mission is to promote career opportunities in health care to high school students and to enhance the delivery of quality healthcare to individuals.

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

Seeing a community of survivors, family members and friends, and volunteers come together to raise awareness of Preeclampsia and HELLP Syndrome at Charlotte's first Promise Walk for Preeclampsia™. It was no longer about nearly losing my life to HELLP Syndrome, but celebrating the lives of those who had survived and hopefully saving more lives through greater awareness.

 

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What was your experience with preeclampsia?

 

On February 17th, 2005 I was so blessed to become a mom to a beautiful, blue-eyed, baby boy. Roddick was born 2 weeks early, by emergency c-section, due to my blood pressure staying elevated, even with bed rest. My husband was out of town for work, so he missed the birth of his 1st child. It was crazy, nurses and doctors running around trying to get me into surgery and deliver my son. Much of the delivery was a blur. They had me on and off mag sulfate to control my bp. I felt so awful, I kept thinking that this surely couldn't be what it felt like to be a new mom. I felt so bad that I didn't even have the warmth and compassion I should have had for my newborn. The next day my situation declined. I was in my room alone with my newborn son. I decided that I needed to get up, get to the bathroom and freshen up. I pulled Roddick's basinet into the bathroom with me, washed up, and headed back to the bed. I was completely exhausted! I finally got settled back into to my bed. As Roddick lay sound asleep in his basinet next to my bed, I noticed that the letters and numbers lifted up off of the tv screen I was watching, and started to float across the room. I thought that was really weird. I decided that I better call the nurse and let her know. By then it was too late. There, alone, I had my 1st eclamptic seizure. I'm not sure of what happened exactly, I don't remember anything until a day or so later, after which I had experienced ANOTHER eclamptic seizure. I woke up, finally, in the ICU. On the wall, across from the end of my hospital bed, hung a picture of my sweet little baby boy. This picture was the only way I was able to see him for several days. It felt like my heart was broken. This was my 1st of 3 experiences with preeclamptic pregnancies; 3 preeclamptic pregnancies and my babies and I were blessed to survive.

 

My brother, a Physician's Assistant, had never seen anyone go through what I went through. A week or so after I was discharged from the hospital, he was able to use my experience to help diagnose, and treat, a woman in his ER. I believe my experience may have helped to save her life.

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


I have always felt that my doctor didn't 'scare' me enough and I wasn't told much about preeclampsia. I was put on modified bed rest, but since they didn't seem too concerned, I didn't see the seriousness of the situation. So modified bed rest, to me, was just putting my feet up a little more often. I could have done so much more to take care of myself and my baby. I later learned that this particular doctor had never had a patient experience eclamptic seizures. When I asked this doctor if I should see a perinatologist for my next pregnancy, she said "I don't see why. Your blood pressure was never really that high." Needless to say, I found another doctor and I made sure to find out all I could about preeclampsia and eclampsia.

Why do you volunteer for the Preeclampsia Foundation?


I feel so very strongly that we need to do all we can to spread the word about preeclampsia and other hypertensive disorders. Most importantly to find a cure so that lives can be saved. I'm hoping that doctors will find a way to communicate with their patients about the seriousness of these disorders.

What are your goals and dreams for your involvement with the Foundation?


I have spent the last year training for a 50 miles trail race. The race will take place December 15, 2012 on Look Out Mountain in Chattanooga, Tenn. I decided to run this race in remembrance of all the lives that have been taken by hypertensive disorders of pregnancy and also to celebrate being a survivor of preeclampsia & eclampsia. I made a goal to raise $2012 for the foundation. During this year of training, this has really become so much more to me. It has been an emotional ride (or run, I should say) and I'm excited to step foot on the trail and give it all I've got. No matter whether I finish the race or not, I've still won the battle.

 

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


Being able to bring awareness of these disorders to people who would have otherwise had no idea about them. Since I'm a survivor, I know first hand what it's like to experience preeclampsia and eclampsia. I'm invested in it and therefore I can relay the importance for fundraising and finding a cure. It feels wonderful to know that donations are coming in and we are getting one step closer to finding a cure!

 

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It is the time of year where I spend quite a bit of time reflecting. Since our son's angelversary was December 28th, it's natural to think not only of the past year, but also of the time our lives changed forever. It has been 7 years now since that day and I can honestly say that I would have never believed I would be where I am today. A few weeks after the loss of our son, I was researching on the internet to figure out what happened to me when I found the Preeclampsia Foundation. It was perfect timing to bond with other bereaved parents on the forums. I found healing through the community of sharing our losses and our grief. It was easier to bare knowing there were others I could turn to that had experienced the same devastation. I spent alot of time on the forums and through my time there was where I felt the need to give back. I made it through the blackest of days thanks to those ladies. I knew if I could do it, so could others. I not only wanted to help families avoid my heartache, but help those that that unfortunately found us the hard way. In doing so I found out that I healed more and more myself. The hard days became fewer and farther apart. Then once I started, I couldn't stop. I had to do more and more. Every time I read of another loss, I get mad and my determination doubles.

This past year, I was asked by a reporter where would I be without the Preeclampsia Foundation. I didn't have an answer for her and I've spent many months trying to put the response into words. I can guarantee that I would have become a very bitter person towards anyone with simple and successful pregnancies. The volunteer work that I do has given meaning not only to my life, but to Cooper's. I refuse to let his life be meaningless. That desire has fueled plenty of sleepless nights thinking of ways to change the world. I have met any amazing group of women across the country that are now some of my closest friends. Even though most of them didn't suffer a loss, we are still bonded by harrowing pregnancy experiences. Almost like our own sorority. These ladies know deep down what it's like to have zero control of your situation. And I know that if I ever have another pregnancy, the members of the Preeclampsia Foundation will be there to support me no matter the outcome.

Volunteer Nicole Purnell is the Preeclampsia Foundation's 2012 Volunteer of the Year.

 

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Terrell and Kimberly Smith began 2012 with joy and anticipation as they planned for the arrival of their baby girl. But on March 12, they received the worst news of their lives: Kimberly's blood pressure hit 200/100 and her vitals were rapidly deteriorating. Their baby girl, Lauren Kelly, was gone at just 22 weeks due to severe preeclampsia.

The Smiths refused to let their tragedy go unheard: Kimberly reached out to the Preeclampsia Foundation and asked what she could do.

"South Carolina has never held a Promise Walk before, and even in conversations with various public health professionals, pregnant women, and women impacted by preeclampsia, many had not heard of the Preeclampsia Foundation," explained Smith. So she decided her goal was to bring awareness and support to the "wonderful work the Foundation is doing throughout our nation" by bringing the Promise Walk to her home state.

She has since partnered with local health care providers throughout the state and used her passion and the memory of her little girl to start making a difference in the health outcomes for other women. Kimberly also has a robust social media presence: not a day goes by that Kimberly isn't seen tweeting life-saving preeclampsia tips (check her out @MrsKimSmith and @SCPromiseWalk).

Although the first Columbia Promise Walk is only a few months away, Kimberly is already excited for what is shaping up to be an amazing event, with fun kid zone activities, a beautiful survivor and memorial storytime, music, and lots of activities with community partners. Ultimately, she hopes that her event can help give others who have shared similar experience the hope that they are not alone.

The first Columbia Promise Walk for Preeclampsia will be on Saturday, May 18, 2013 at Riverfront Park in Columbia, South Carolina. Volunteers, sponsors and walkers welcome!

 

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Margaret Meade once said, "Never doubt what a small committed group of citizens can do to change the world. Indeed, it is the only thing that has."

At the Preeclampsia Foundation, we like to say, "Never doubt what a large cohort of preeclampsia survivors can do to catalyze research. Indeed, it is the only thing that will."

Welcome to our Special Research Edition of Expectations.

I've heard thousands of stories with poor outcomes that started with "If only I had known" or "If only I had known and pushed harder to be taken seriously." What women wanted to know were the signs and symptoms of preeclampsia. With that information, they would have immediately responded to that unrelenting headache or the searing pain running up over the shoulder. They would have known to push back, if their complaints weren't taken seriously, with a request to be have their blood pressure checked, be seen by an expert, or have blood drawn for analysis.

After so many stories, we initiated research to quantify what we already knew anecdotally regarding the need for patient education. Our own 2008 "Lack of Preeclampsia Awareness Study" and studies performed by Dr. Whitney You and published in 2011 in the American Journal of the Obstetrics & Gynecology, confirmed our suspicion that not enough women are informed about preeclampsia, and even if they are informed, comprehension is poor.

Thus began an active part of our mission: patient education. Those outcomes are now being realized as the professional organization that board certifies the majority of our nation's obstetricians will be formally recommending patient education as a regular part of prenatal and postpartum care. Our Illustrated Preeclampsia Symptoms Tear Pad has been included in a California state-wide collaborative, CMQCC, that is intended to reduce maternal deaths.

Improving patient education tools and methods is just one way that women affected by preeclampsia -- our "cohort" -- identified a problem and then worked to change it. (Our work in patient education is definitely not done, but enormous progress has been realized.)

But can preeclampsia survivors advance medical research? Can we push scientists more quickly to a prevention, a cure, or an intervention (other than delivering the baby)?

Before the summer is out, we will be launching The Preeclampsia Registry, a living data source of patients and family members, to accelerate research.

There is plenty of precedent that citizen scientists, armed with their own "stories" and DNA, have successfully isolated genes responsible for their disease, or identified useful therapies. We, too, can catalyze research, equip researchers with novel hypotheses and a cohort -- a cohort not just willing, but impatient to see progress and to use their own cases as the enabling data.

What's ahead for The Preeclampsia Registry?

Approximately 100 "beta users" have already enrolled in the registry to help us test the technology. We have already secured approval from our Institutional Review Board. Before the summer is over, the registry will be open for public enrollment, including international registrants. Participants will include those directly affected and their female relatives who will enter self-reported information, upload medical records, and, in Phase 2 (planned for next year), biological samples such as DNA.

Researchers will be able to do studies over long periods of time, across geographical boundaries, and within various demographic groups.

How can you participate?

1. Check back often at www.PreeclampsiaRegistry.org for the upcoming announcement about the Registry's public launch.

2. Participate in our soon to be announced Patient Advisory Council, a diverse group of affected individuals who will influence research questions.

3. Give a gift to the Preeclampsia Foundation and, if you wish, earmark it for The Preeclampsia Registry.

I'm looking forward to joining Registry participants as we add our collective experiences to the scientific body of knowledge that will make a difference for future mothers and their babies!

Warmest regards,

Eleni Tsigas
Executive Director

 

 

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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 as several members of our Board of Directors have done.

So this month's Expectations celebrates the impact all those dads and granddads have had on the Preeclampsia Foundation over the past decade: whether they are volunteering, sharing their story or wondering how to find information. So 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 and dedicate this issue to all of you!

We also have exciting news about this year's Saving Grace in NYC and recognize the success of our Preeclampsia Awareness Month efforts, neither of which would have been possible without the volunteer support of women and men.

On a closing note, I just returned from a week in San Antonio where I spent time talking with hundreds of midwives at the American College of Nurse-Midwives' annual conference. It was extremely gratifying to be thanked sincerely and often for the programs and services we provide. Our educational materials were eagerly snatched up; most midwives share our passion for patient education and have the training and temperment to do it well. This patient education program is one of our most successful iniatives - we've already distributed over 50,000 educational materials in the first half of 2011!

Do you have a inspiring or heartfelt "dad" story to share? Please leave a comment.

 
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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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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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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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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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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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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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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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Posted on in Raising Awareness and Fundraising

Lauren Larsen thought she had a wonderful life: loving marriage, good friends, successful career and her first child on the way. Shortly after entering the ninth month of her pregnancy, Lauren's life took a perilous turn due to the rapid onset of preeclampsia. After more than a month in intensive care and years of recovery work ahead of her, Lauren emerged from her trials with the desire to build a life full of purpose and meaning. Zuzu's Petals: A True Story of Second Chances is Lauren's real-life memoir of her personal battle with preeclampsia and her drive to make her "second chance at life" count for more than the average person.

2010 Saving Grace co-chair Autumn Spear described Zuzu's Petals as one of the best books she has ever read. "Obviously I have a personal connection to the book having shared severe preeclampsia, but it's also just a great story and written with humor and grace... Many time I found myself saying aloud 'Ah ha! See, that did happen, I knew it!' To have a book that so thoughtfully details such a tragic experience is a blessing and gift."

Lauren's book gives voice to the countless number of women who have survived preeclampsia and were left wondering, "Why did this happen to me?" Her dry humor and stark honesty permeate the story, letting the reader feel that they are experiencing each increasingly devastating moment of her experience. By the end, the reader triumphs with Lauren as she not only conquers the effects of her hospitalization, but chooses to make her existence count.

One of the most generous aspects of Zuzu's Petals is that each purchase from Lauren's website can be designated to benefit preeclampsia research. To purchase a copy and enjoy an excellent, if not grimly realistic, story, please visit Lauren's website and select "preeclampsia research" for a portion of your purchase to benefit the Preeclampsia Foundation. You can also find more information about the book in the Preeclampsia Foundation marketplace.

 

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When Jaime Nolan lost her premature baby, Grace Ann, she was determined not to let the meaning of her life end there.

Born at 27 weeks after Jaime’s sudden onset of severe preeclampsia, Grace only survived eight days while her mother fought for her life in the intensive care unit. When Grace went into cardiac arrest, Joe Nolan watched the doctor standing over his daughter’s incubator, performing chest compressions with his thumb.
Jaime discovered the Preeclampsia Foundation online and found a network of support that helped her work through her grief. Determined to take action and help prevent others from enduring such a painful loss, she found out the Foundation needed to develop an annual fundraiser.

Jaime gathered a local group of volunteers and chaired what she thought would be a one-time gala in Minneapolis. At the same time she was helping with the first national walk-a-thon, which was expected to become the Foundation’s annual fundraiser.

The Saving Grace gala was held in November 2005 and the moving event raised more than $57,000. The Nolans were asked if the Foundation could make the gala an annual event and they were honored that Saving Grace— A Night of Hope has since become the signature event.

Each year Saving Grace rotates among major cities in North America, increasing national awareness of the disorder and taking advantage of the unique relationships and synergy of each city, said Eleni Tsigas, Executive Director of the Preeclampsia Foundation. She served as chair of the 2008 gala in Washington, D.C., which was selected to coincide with the annual meeting of the World Congress of the International Society for the Study of Hypertension in Pregnancy (ISSHP) and to increase awareness among legislators.

“It connected us to an international agenda,” Tsigas said. “And it gave us an opportunity to reach out to Capitol Hill and begin advocacy and public policy efforts.”

With each gala, one constant is the telling of stories— powerful stories that put a face on preeclampsia through video stories accompanied by verses of “Amazing Grace.” The stories connect the guests: whether they are survivors and their families, researchers, members of the medical community or someone with no previous experience with the pregnancy disorder.

“The combination of all these people who care or are learning to care leads to a very inspiring evening,” Tsigas said.

When Jill Siegel coordinated the 2009 event in Chicago, she was worried about raising money in a shattered economy. There were gaps in sponsorships and donations. She asked survivors to write their stories and ask for donations of support so they could be included in a special commemorative program, an effort that netted nearly $7,500.

“It is so important we tell our stories,” said Siegel, director of communications for the Foundation. “Statistics may be hard to remember but you won’t forget the stories and if you remember them, you can share them with others and if you share them with others you can save lives. That’s one of the key roles Saving Grace plays.”

Sometimes, those stories are caught in unforgettable moments. Lauren Larsen was chairing the 2006 gala in San Francisco when her 5-year-old daughter, Clare, walked up to Tsigas with a month’s worth of her “giving money,” pressing four $1 bills into her hand.

“I thought I’d cry on the spot,” Larsen said.

When Larsen was asked to chair the gala, she didn’t feel prepared for the role but a bold move allowed her to double the previous year’s sponsorships. The motivational speaker gave talks for Johnson & Johnson and decided to e-mail the chairman and CEO, asking if he’d like to co-chair. The subject line read “Please say yes.” William Weldon agreed and his company became the lead sponsor, bringing in $265,000.

“The night just came together and it was just amazing, people laughing, people crying, people having their hearts touched,” she said.

Jaime Nolan coordinated the gala again in 2007 with co-chair Leslie Weeks. It was held in Boston, in a small room that forced an intimacy unusual among charity galas. The keynote address and Siegel’s personal story of survival were not delivered like rehearsed speeches but more like living room conversations.

“It felt as if they were personally connected with each person there,” Weeks said.

Maybe that’s what led to a moment that still gives Tsigas chills. During the auction there was a paddle drive and as it was nearing to a close, a man stood up and asked what the total was. It was quickly calculated at about $20,000. He challenged the guests to reach $30,000 and he would match it. Paddles were flying and the goal was reached within minutes.

“I was flying around the room, with tears in my eyes, trying to get bid numbers,” Tsigas recalled.


And Nolan remembers the tears too, from when she was standing at the podium, thinking about her daughter’s legacy, a legacy that has led to more than $800,000 to support the work of the Preeclampsia Foundation.

“While I know that the event is not about Grace herself, it was through her that the event was created and has been able to touch so many,” she said.

 

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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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