I found the Preeclampsia Foundation website in January 2003 when I was pregnant with my second child – and terrified of what might happen. That second trimester panic so many of our members know all too well.

I’ve been a volunteer ever since. Anne Garrett was my savior, and by the time my daughter Camille was born, I was a devotee for life. I thought Anne’s vision and leadership were amazing, and I wanted to help her and the Preeclampsia Foundation in any way I could. I’d have washed her windows if she’d asked me.

When I had severe preeclampsia during my first pregnancy in 1998, there was no one there. No one to help me pick up and keep going after that freight train hit. But the Preeclampsia Foundation is that ‘someone’, or rather many ‘someones’, dedicated to raising awareness and funding research. Most of all, the Preeclampsia Foundation is here providing support for women and families who need someone to turn to after preeclampsia turns their lives upside down.

The Foundation has grown exponentially since I discovered it – an amazing achievement considering it has all happened through the dedication of our volunteers. There’s so much that we can be proud of. I was thrilled when the Foundation got the Gates grant for the International Preeclampsia Summit in 2004. And I’m tickled every time I get a Google Alert in my inbox telling me that somewhere we’ve been quoted as an authority.

I’ve been honored to accept a position on the Board of Directors, to begin in January 2007. I’m humbled almost beyond words. We’re blessed to have the team that we have working on this. Not only are they a pleasure to work with, they’re also quite brilliant. In the next year, we’re hoping to develop a comprehensive support plan with specific protocol for what we offer members at different stages of their life: people thinking of trying to conceive, after a loss, in later life after childbearing, during bedrest, etc. The hope is to establish a standard of service, with continuity of support. We want to make sure our members have all the information they need to make the critical choices forced upon them. The next stage of the plan is to figure out what areas of support we should offer, and develop a task force with volunteers from each service area to identify the priorities and make recommendations.

The experience of our volunteers is critical: they know better than anyone what can help in the midst of a crisis. And sadly, we know how devastating that crisis can be. My heart swells when one of our members who we’ve followed since the loss of a child experiences the healthy birth of another. When our lovely Ileana had her Bobster after losing Angel, when Julie had Jack after losing Zach, when Jenn had Gabe after losing Maggie, and Tracy had Casey after the loss of Katlyne - I couldn’t be any prouder of them than if I was their real auntie. They and others like them are our living hope that there can be joy and life after loss.

Over the past three years, you guys have all become my family. Making sure our ‘girls’ are properly taken care of is – second only to caring for my own kids – my mission in life.

 

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Continuing Medical Education (CME) courses are a key way for medical profes­sionals to upgrade their skills, master the latest research and qualify for promotions and membership in industry organizations. Last year the Preeclampsia Foundation and the University of Minnesota’s Deborah E. Powell Center for Women’s Health joined together to create the first-ever online CME course devoted to preeclampsia prediction, management and outcomes. Now that the first offering of the course is complete, feedback from participants suggests that it could play an important role in improving awareness, diagnosis and treatment.

The CME was divided into three modules: one devoted to diagnosis, a second with the latest treatment and management informa­tion, and the third focusing on heart disease prevention in preeclampsia survivors. Physi­cians Dr. Thomas Easterling, Dr. Michael Katz and Dr. Tanya Melnik conducted the lectures, which were accompanied by online PowerPoint presentations.

When participants were asked to rate the CME, “the evaluations showed overwhelm­ingly excellent scores,” says Becky Gams, an RN with the University of Minnesota who ran the CME. Seventy-four percent rated the first module as “excellent.” Even more im­pressive were the comments that participants made when asked what changes they would make to their work as a result of the course. “[I will] monitor my pregnant patients more closely and have a higher suspicion of preec­lampsia,” wrote one student. Another said, “Having a better understanding of the pa­thology and possible predictors will heighten my awareness about potential complications during the preconception and ante-natal time period.” Several wrote that they would encourage patients to manage their weight or hypertension before conception.

J. Thomas Viall, Executive Director of the Preeclampsia Foundation, says it is criti­cal that the Preeclampsia Foundation offer further CME credits through its website. “It reinforces our credibility with both the pro­fessional and patient communities,” he says. “The challenge is to do it in a way that is cost effective as well as compelling so as to drive traffic.” Producing the material, administer­ing the CME certification and hosting the website is expensive, and the existing course was made possible through a $10,000 grant from Black River Asset Management. Vicki Nolan, the sister of Preeclampsia Foundation operations director Jamie Nolan, works for Black River and applied for the grant. There is also pressure to improve production values to compete with more lavish CME courses designed by for-profit companies. At the moment, the course is available online for in­formation purposes, but not for credit. “We are currently in consultation with our Medi­cal Advisory Board to develop new CME and professional education opportunities and hope to have a new set of courses available by the end of the year,” says Mr. Viall.

 

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After several years of trying, the Preeclampsia Foundation was recently notified that it has finally been accepted in to the Combined Federal Campaign (CFC).

As anyone familiar with the CFC knows, the application and review process for accep­tance as a CFC charity is rigorous. Among other things, to be part of the national campaign, each charity must prove that it actually does have a national presence. As always, our Preeclampsia Foundation volunteers came through with data, facts, and figures that enabled staff to complete the application in timely fashion and make the cut!

For those who may be unfamiliar with the CFC, it is the only authorized fundraising entity for federal government employees, including postal employees and military personnel. It enables all federal employees to easily donate money to the charity organiza­tions of their choice. CFC’s mission is to promote and support philanthropy through a program that is employee focused, cost-efficient, and effective in providing all fed­eral employees the opportunity to improve the quality of life for all. The inclusion of the Preeclampsia Foundation is exciting because it opens a potential funding stream that previously had not been available.

This year’s campaign will kick off on Sep­tember 1 and run through December 15. When asked about how PF members can get involved, Tom Viall, PF Executive Director said, “Obviously, if you work for the Federal government, we hope you will commit to supporting the Foundation by designating your contribution to CFC Donor Code 99819.” He continued, “if you know some­one who works for the ‘Feds,’ please don’t be shy about giving them information about PF (send them to our website or get some brochures) and ask if they would consider designating a contribution to CFC Donor Code 99819.”

The Federal Office of Personnel Manage­ment (OPM) administers the CFC which they describe as the world’s largest work­place charity drive. In 2005, the campaign raised $268.5 million. Since its inception in 1961, the federal community has do­nated more than $5.75 billion to the CFC. Employees and military personnel in the National Capital Area CFC, the largest local campaign, made pledges totaling more than $60 million, an increase of more than $2.4 million over the previous year.

Viall added, “It may take some time for the Foundation to build a following within the campaign, but…this can be big! Oh, did I mention that our CFC Donor Code is 99819?”

 

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This time of year brings so many warm memories of Autumn's past, but one Fall season in particular brings bitter-sweet memories.

This time three years ago, I was nearing the middle of my third trimester and settling into our new home. I noticed some severe swelling and was experiencing daily headaches. I brought it to the attention of my doctors however they dismissed it as regular pregnancy symptoms.

The day after Halloween I went to my 35 week OB appointment. Everything seemed to be a whirl-wind from the moment I stepped into his office until I was rushed to the OB Triage area of the hospital with complications due to preeclampsia. I was surrounded by a team of eight doctors as they informed me that they needed to get my baby out or both our lives would be in jeopardy.

Little did I know that this was just the beginning of the scariest time in my family's life.

After 13 hours of hard labor our son Brennan was born five weeks premature weighing 4 lbs, 9 oz. He was a tiny little guy in comparison to what I was expecting a newborn to resemble. Within moments after my delivery my vision started fading in and out and I began to experience severe headaches. I was told that my blood pressure would come down after delivery but as doctors came in and out of my hospital room, the numbers continued to climb. My OB said there was nothing left for him to do and I was released from the hospital on blood pressure meds. Within four days of arriving home I couldn't shake the blind spots in my vision and the headaches made my mind and senses fuzzy. The most frightening point came one week after my son was born. I began to slur my words, and my extremities were going numb. I began experiencing all the symptoms of a stroke and my reflexes were locking as I was on the brink of a seizure. I was rushed to the emergency room with a blood pressure of 180/120. For four days the doctors vigilantly watched over me as my numbers continued on an upward trend. It wasn't until I was six weeks post-partum that my blood pressure began to return to normal and over a year before my vision was completely restored.

Too many moms experience preeclampsia and many of them die from this horrible and devastating condition. I was one of the lucky ones. I am a survivor. In my 31 years, I have faced cancer twice and other battles with my health, but have never come so close to death as I did when I had preeclampsia.

Preeclampsia claims the life of 76,000 moms and 500,000 infants each year. My ultimate dream in life is to help educate women and families on the signs of this horrible disease. I am hoping that with donations from my effort, we can pass this information along helping save the lives of thousands of moms and babies and provide support in research to cure preeclampsia. Some of these women will never get a chance to meet their children. I want to ensure that they get that chance.

To honor the memory of the moms who did not have the opportunity to see their children grow up and the babies who never got to encounter all of life's experiences I wanted to find a way to give back. On January 8, 2011, I am raising donations running the Walt Disney World Half Marathon in Orlando, Fla. for these moms and babies.

Editor's note: if you would like to support Laura in her race effort, please contact her at navywifedale@yahoo.com.

 

 

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Posted on in MAKE A DIFFERENCE

Volunteer Profile - December 2010

Becky Sloan, National Promise Walk for Preeclampsia Director

What was your experience with preeclampsia?
I began experiencing face and body swelling and headaches at 22 weeks. These symptoms, along with extreme weight gain, bouts of high blood pressure, and lower fetal movement, continued until 31 weeks. My doctor was never concerned with my symptoms and told me that ‘if I didn’t stop gaining weight, I would gain 70 lbs. before the pregnancy was over.’ I didn’t make it out of the office before I burst into tears. I felt awful, like no one cared, and I still had no idea what preeclampsia was because the signs and symptoms were never mentioned to me. I was never diagnosed with anything more than ‘being a first time worried mom,’ and at 31 weeks, 6 days I went into code blue eclamptic seizures. I actually had a doctor’s appointment earlier in the day and was told to continue to take Tylenol for my excruciating headache and was sent home. Later that evening, I was home alone and called labor and delivery to ask for help. I was told I needed to go to the hospital to be assessed. I decided to drive myself to hospital so as not to bother anyone at that time of night, but not before getting sick in my driveway…another classic preeclampsia symptom. I had enough sense to know that I was not in my right mind but that I shouldn’t wait for a ride. Luckily I didn’t wait, because if I had waited for a ride from a friend or even an ambulance I don’t think I would be here today. I somehow made it through the city despite seeing stars, almost driving into parked cars, and weaving all over the road. I parked my car and walked into labor and delivery thinking they would put me on bed rest, but I was quickly escorted to a room and eleven short minutes later, I began seizing and lost consciousness. My husband didn’t have a cell phone at the time, so I had no way to contact him. He came home to a post-it note on our door that said I had gone to the hospital. He had no idea what he was about to face: three hours of not knowing if his new wife and baby would survive this ordeal. I am happy to say WE did! On October 30, 2004, our son, Jacob William, was born two months premature due to severe preeclampsia, and surprisingly neither one of us had any lasting health issues. We have since been blessed with a baby girl in 2008, Brynn Holland, who arrived a month early due to sudden onset of preeclampsia.

Why do you volunteer for the Preeclampsia Foundation?
I volunteer because my family and I are some of the lucky ones. Many Foundation volunteers unfortunately are here to honor those whom they have lost. I am here to stand up and say that you shouldn’t have to lose a child, daughter, sibling, or grandchild in order to make a difference. What happened to me wasn’t ok. My pregnancy ordeal should have never happened. My doctor was obviously incredibly uninformed about preeclampsia, which in turn made me unaware of the disease. I volunteer to raise awareness by telling my story. If my doctor would have known; if I had known the signs and symptoms, maybe my story would have been different and most likely I wouldn’t be volunteering. I guess you can say the Foundation was lucky in that respect!

What goals and dreams do you have for how the PF could inspire more Walk activities?
Ideally I would like to see walk coordinators not have to worry about finances and sponsors, and be able to focus more on participation and raising awareness. If the Promise Walk gained continuous national sponsorship support, our volunteer coordinators would be able to spend their invaluable time in the local community raising awareness and encouraging participants to walk rather than wondering how they are going to pay for their walk.

How aware were you about preeclampsia before/during your pregnancy?
I read the two or three sentences in What to Expect When You Are Expecting. I never heard a word about it from my OB throughout my entire pregnancy and certainly didn’t know that high blood pressure or swelling were symptoms associated with the disease.


What resources do you find most helpful to volunteers and Foundation members?
The Foundation gave me a starting point to figuring out what happened to me. Even after meeting with my doctor to get answers, I was told that my case was considered ‘a fluke.’ That was it… no responsibility taken for what happened or ‘we are sorry for your ordeal.’ It was strangely comforting to know I wasn’t alone and a place I could go to be miserable, not having to put on a fake, happy mommy face. The friends and collaborations I have made through this organization over the years are partially responsible for the healing I went through to ‘get over’ what happened to my family and me.


What has been your most gratifying moment as a Foundation volunteer?
I don’t know…tough question. Coordinating walks in San Diego while accepting the National Walk Director position this past year has been a lot of hard work, so I don’t think that I have had time to enjoy the success of the Promise Walks. I feel like I still have a lot of work to do, because we have many areas of the US that aren’t holding walks. I have high expectations for myself and for the Promise Walk, so I am not sure I have had my most ‘gratifying volunteer moment’ yet. I can say that I am very proud of the work I have done thus far and am hopeful that the work I am doing today, tomorrow, and in the future will bring me to that most gratifying moment. I guess maybe the day my daughter doesn’t have to worry about preeclampsia, I will feel that moment.

 

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Volunteer Profile- January 2011

Nicole Purnell, Southwest Regional Coordinator

What was your experience with preeclampsia?
My pregnancy seemed rather normal and uneventful to me until I reached 33 weeks. My blood pressure had been creeping upward, but I wasn't concerned about it. I had a terrible cold and was taking meds that raised my blood pressure even further and that was when I was put on bedrest. At 34+5 weeks, I woke up in the middle of the night not feeling right. My husband took me to L&D just to be safe. Or so we thought. Once we got there and were checked in, the nurses started hooking me up to all the monitors. The monitors were silent and they were not able to find a heartbeat. When the epidural was place, I crashed. I remember my OB slapping me on the legs and yelling at me to breathe. I was rushed for an emergency c-section and they discovered that my placenta had completed detached and I was bleeding internally. Those first 24 hours I survived a second surgery to resolve the uncontrolled bleeding, DIC, kidney and liver failure and 13 blood transfusions. I spent 5 days in ICU and another 4 days on the post-op floor before being discharged. A few days after my discharge, we buried our son.

Why do you volunteer for the Preeclampsia Foundation?
There are so many reasons why I continue to volunteer. It started with wanting to spread awareness so other families would have to go through what we did. There is still a huge need to spread awareness and for mom's to take preeclampsia seriously. I want to be able to support families that have had a loss and let them know that they can survive through the pain. They can build a legacy for their children so that they live on.

What goals and dreams do you have for how the PF could inspire more local activities?
We all realize how traumatic preeclampsia is even with the best outcomes. There is a need to connect to other families that truly understand how pregnancy isn't always blissful and happy. We can support each other through the hard times and celebrate when we cheat this disease from another tragedy. We need leaders to take that step of faith to reach out to others locally. When we gather, we create awarness and community.

How aware were you about preeclampsia before/during your pregnancy?
I was blissfully ignorant. When preeclampsia was first mentioned to me, I ran to my pregnancy books which mention it in almost passing. The short paragraphs feed my naivete that all things would be fine and this was a rare complication and the worst that could happen is that I get put on bedrest and deliver a little early. I had no idea it could end like it did.

What resources do you find most helpful to volunteers and Foundation members?
The forums! The Grief and Loss forums were an amazing area of support for me. Not only did I find other moms that had lost babies, but had lost them in the very same traumatic way that I did. I found moms that walked in my shoes and there is immense comfort in knowing you aren't alone.

What has been your most gratifying moment as a Foundation volunteer?
Going to Saving Grace was an amazing event and it was wonderful to "meet" the people I have been working with for years. But hands down the most gratifying was the 2010 Promise Walk. There were many moments where I looked around in awe. To think that I would never have had that opportunity if my world hadn't been turned upside down. When we started adding up all the numbers in the end, I sat there and cried. Every person that came and every dollar that was raised gave meaning to my son's sacrifice. Even though he never took one breath, he has lives on through others.

 

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

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

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

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

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

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Thirty-five volunteer-driven walks took place across the country, twelve of those in new cities, and the national fundraising goal of $400,000 was surpassed before the last walk took place.

"There were so many highlights and accomplishments this year that it's hard to know where to start!" said 2012 National Promise Walk Coordinator Becky Sloan. "We increased national awareness, especially through new media spots, proclamations and local elected officials who gave their time to acknowledge Preeclampsia Awareness Month at many walks. We also saw an overwhelming dedication of new and continuing volunteers that came out in droves to help our coordinators."

Many walks exceeded their fundraising goals, including Boston, who set a goal of $16,775 and raised an astounding $29,316; and Oklahoma City, who set a goal of $8,400 and raised an amazing $15,680. Other cities that far exceeded their goals included Leigh Valley/Easton who exceeded their goal by $3,000; San Diego, who exceeded their goal by $4,000; Portland, who exceeded their goal by $4,000, and St. Louis, who exceeded their goal by $3,000.

Aside from the monetary goal, volunteers have done a fantastic job raising awareness through advocacy and media outreach. Walk coordinators secured more than 30 state and local proclamations or state resolutions declaring May as Preeclampsia Awareness Month. Significant media coverage - TV, radio and print, plus Facebook and Twitter - brought preeclampsia awareness and key information to the public and targeted audiences.

This was also the first year that the Foundation utilized a system of Regional Promise Walk Coaches: experienced walk volunteers who helped provide guidance and support for walks across specific geographic regions.

"We're so excited about the success and influence our region's walks have had this year," commented Mid-Atlantic Regional Coach Dawn Detweiler. "With three new walks and two continuing walks in our area, our increased walker participation and sponsorship commitments have made a significant difference locally and in supporting the national drive."

"Successful regional efforts will play an increasingly important role in the growth of The Promise Walk for Preeclampsia," explained executive director Eleni Tsigas.

Kim Timer, coordinator of the inaugural Erie, Pennsylvania, walk stated, "It was amazing to see the support we received from the community and the amount of people who shared their own preeclampsia stories after we announced the Erie walk."

There is still time to donate to your favorite walk! The Promise Walk season ends on August 31, so donate today at www.promisewalk.org.

 

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What was your experience with preeclampsia?

I had severe preeclampsia (PE) and borderline HELLP syndrome with my first pregnancy at 35 weeks. I had warning signs as early as 30 weeks that I reported to my doctor, but he blew me off as a first time mom who didn't know what pregnancy was like. By the time I was diagnosed, I was in heart failure, cerebral edema, and had platelets low enough to qualify for class II HELLP. I was in really bad shape. I was transferred to another hospital, and the doctor there said we should pray the induction worked because a c-section would kill me. My first daughter was born mildly IUGR. She's almost 9 and doing well today.

I found a new doctor who monitored me closely for my second birth. I started showing the same early warning signs at 32 weeks, and was induced at 37 weeks with mild PE. My second daughter was also mildly IUGR and still suffers ill effects at 5 and a half.

We wanted a third child and ended up with twins. Surprise! It was terrifying. I was already at high risk with my history, and here I was carrying multiples. I was diagnosed with PIH at 22 weeks, mild PE at 31 weeks, hospitalized at 33 weeks, and induced at 36 weeks after being on some form of bedrest for 14 weeks. My third daughter and son were NOT growth restricted. (I credit low dose aspirin for that.) A few hours after birth, I slipped into a coma with severe postpartum PE. The worst of it lasted about 24 hours, then started to turn around. Three years later, I'm completely recovered.

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

I had never heard of PE before I was diagnosed in my first pregnancy. I knew something wasn't right, but I trusted my doctor. With my next pregnancies, I learned everything I could, and did my best to advocate for myself and my children. I became an active lurker and occasional poster on the PF's forum during my twin pregnancy, and it was a huge help to have that support.

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

I volunteer for the PF because my daughters and future daughter in law are all at higher risk because I had it. I don't want them to go through what I did, or my grandchildren to be premature and growth restricted.

I trained for a marathon that I used as a fundraiser for the PF. This was my second marathon and ninth endurance race. I ran the Leading Ladies marathon in South Dakota on August 19 of this year. I injured my foot a few weeks before, but had clearance from my doctor to run. I made it 23 miles on a bad foot! I was disappointed not to finish the full 26.2, but I thought back to my births. Sometimes you have to change your plans to ensure the best possible outcome. Thinking of the women I've met through the PF definitely helped me through my training and a brutal race.

I will be joining the planning committee for the Chicago Promise Walk this year. I'm excited to be more involved with that, as well.

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

I have a big goal for continuing to run marathons and raise funds and awareness for the PF. (Assuming my foot heals well.) My kids are still young, but in a few years I hope to run a series of races across the country (as of now, it's 11 full marathons and 13 half marathons in one year.) The fundraising is important, but more important is raising awareness all across the country so women have the information they need to get proper care.

I keep a blog about my running and preeclampsia awareness: whatyourunningfor.blogspot.com

What has been your most gratifying moment as a Foundation?

I really enjoy getting to know other mothers and hearing their stories. I hate that we have PE in common, but I hope knowing they're not alone can help them work through what happened as it did for me. I share Survivor Stories on my blog, and several of the women have thanked me for the opportunity to give voice to their experiences.

 

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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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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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At the recent Saving Grace – A Night of Hope event in Seattle, Washington, many individuals graciously purchased auction items or made personal donations. Many guests also provided us with their employer’s Matching Donor Forms. It is impressive that some of our donors had already researched their employers’ policies and had discovered this golden opportunity – the Employer Matching Gift Program.

An Employer Matching Gift Program is one where an employer matches an employee’s charitable donation, usually dollar for dollar. Some companies call this a Cash Grants Program or a Matching Grants Program. These Gift Programs can quickly multiply the impact of one employee’s donation, often quite substantially. In some cases an employer may even match up to 2 or 3 times that of the employee’s donation. But even a 1:1 match is incredibly impacting. Along with matching monetary donations, some employers even have programs wherein the company will match qualified volunteer hours with an assigned cash amount.

It is the responsibility of employees to get the “Matching Gift” process started with their employers. Some employers provide their Company Match Program guidelines online, or will supply the information through the Human Resources office. There are even companies out there that will match donations of retirees or employee spouses. An added pleasant surprise is that most employers make this process relatively simple, and usually request minimal documentation (normally only requiring an official donation receipt as well as completion of a quick online form or a one-page matching gift form).

Most employers have stipulations in place regarding minimum or maximum annual donation amounts, and may have other specific requirements, as well. It is the company’s choice as to how the Matching Gift Program is constructed. But any amount of matching gift will make a positive impact on a non-profit foundation.

What are your employer’s policies? Investigate your company! Ask your friends and family members to research their employers’ giving program policies as well!

In next month’s newsletter, we’ll continue sharing information about another avenue that can be used to receive employers’ donations – Philanthropic Grant Programs.

 

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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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Spring is near, and many areas of the country are ready to shake off the snow and welcome the warmer weather. Outdoor gatherings such as garden tours, Easter parades, arts festivals and baby item sales seem to appear everywhere you go. Could these be opportunities in your community for distributing preeclampsia materials at an information stand? Email Johanna Aiken, Director of Patient Education to learn more about distributing brochures and other patient education materials at your local events.

 

There are also a variety of fresh ways you can use the season to benefit the Foundation through fundraising: check out the brand new "Top Ten Spring Fundraising Ideas" for some inspiration. Visit the Events page to see how members in Texas, Iowa, and California have already committed to using spring to refresh their volunteer efforts and inspire local group development. Promise Walk teams are also gearing up for their area walks by hosting sports tournaments, sales, and dinner nights to boost local participation and contributions.

 

Spring Break can also be a great time for students to get involved in making a difference in their local community. Candy sales, flower sales, bicycle or motorcycle rides can rally support for critical awareness and fundraising, and is a great way to get those volunteer hours! Have an idea for a fundraising and awareness project or event in your area? Contact Director of Local Fundraising Dawn Detweiler for support and guidelines.

 

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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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