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LETTER FROM THE EXECUTIVE DIRECTOR 

 

Eleni Tsigas

As we begin the first official National Preeclampsia Awareness Month, as finally designated by the U.S. Department of Health and Human Services, we are enormously grateful to numerous organizations, companies and individuals that are partnering with us in this month-long campaign to educate, inform and inspire. Together we are committed to spreading important information: the symptoms and impact of this life-threatening complication of pregnancy, as well as the critical need for more research and professional education to turn the tide on disastrous maternal and newborn outcomes that result from hypertensive disorders of pregnancy.  

 

 

 

Because preeclampsia awareness saves lives, efforts this month will span the country and cover a variety of communication venues. The Promise Walk for Preeclampsia campaign ad will appear on the digital billboard in New York City's Time Square on May 7, the same day PRnewswire distributes our first multi-media news release, including an infographic, a new 3-minute video, and a brand new patient education tool we'll be introducing that day. Stay tuned!

 
The preeclampsia community - those affected, their families and friends, researchers and healthcare professionals - is passionate about improving pregnancy outcomes. Thousands of people in 44 cities will be participating in The Promise Walk for Preeclampsia™ spreading public awareness and collectively helping us reach our goal to raise $500,000. Promise Walks vary by location, but include guest speakers, appearances by media personalities, raffles, health screenings, children's activities and memorial events.

 

Add to this our first Google+ Hangout with Pregnancy Magazine, our first Twitter Party, three May Twitter Chats - one which features CNN Medical Correspondent Elizabeth Cohen - and over 40 organizations, media journalists, and bloggers partnering with our foundation to share new web content - and I think we have taken Preeclampsia Awareness Month to an entirely new level. See our schedule of social media conversations (via Twitter and Google+) at right.  

 

Later in the month, we hope to hear members of the U.S. House of Representatives speak from the floor of Congress to record these admonitions into our nation's permanent history.

 

Visit http://www.promisewalk.org/campaign to register for a Promise Walk, support a Promise Walk with a donation, or learn more about other scheduled activities. Follow the activity on Twitter at #PreAM13.   

Promise Walks - Making Strides, Delivering Hope!

 

These new initiatives are the result of groundwork laid by the Foundation's board, advisors and staff, over the last several years, but it is the enthusiasm, passion, and tireless work of our Promise Walk Coordinators, and their volunteer teams - and the ardent fundraising by thousands of walkers that is making all of this progress in awareness, education, and catalytic research possible.  

 

In the last three years, The Promise Walk for Preeclampsia™ has funded six research Vision Grants, put over 120,000 educational materials into the hands of pregnant women, provided training to over 5,000 health care providers, supported over 10,000 families, and grown the Foundation's website's outreach to over 1.2 million visitors each year.

 

Later this month, we'll be making an exciting announcement about a research initiative that holds enormous promise to advance not just one but limitless research possibilities. Participants at our 44 Promise Walks will get a sneak peek at this new program, but if we hit our fundraising goal - and believe me, every dollar counts - we will be much closer to realizing this scientific achievement.

 

If you're not participating in a walk this year, please consider doing a Virtual Walk or donating to a friend or family member who is walking. Every stride gets us closer to our ultimate mission - a cure for preeclampsia!  

 

5 Weeks of Themes

 

During each week of May, we will be focusing on a different aspect of our mission to save lives. Check back often and visit us on Facebook and other social media channels to gain new knowledge, pick up tools and tips, and learn from our special guests.  

 

Week 1: Driving awareness, at home and abroad

Week 2: Educating and empowering expectant mothers

Week 3: Highlighting heart health for moms 

Week 4: Accelerating research for a cure

Week 5: Changing the face of health care quality   

 

The articles in this month's issue of Expectations have been chosen to reflect the theme of each week. From each of them, I hope you take away something of real value for your life and to share.

 

I'm looking forward to taking this journey with you!

 

Eleni Tsigas

Executive Director 

HEARD ON THE HILL  
Pregnancy as a Window to Future Health

April Congressional Briefing Highlights How Preeclampsia and Other Conditions Can Affect a Woman's Health Long into the Future

On Tuesday, April 23, 2013, the Society for Maternal-Fetal Medicine (SMFM) sponsored a briefing for congressional officials in Washington, DC, titled "Pregnancy as a Window to Future Health." The briefing was moderated by Dr. Brian Mercer, SMFM President and featured: Dr. George R. Saade, Professor of Obstetrics and Gynecology, University of Texas Medical Branch in Galveston; Dr. M. Kathryn Menard, UpJohn Distinguished Professor of Obstetrics and Gynecology, Vice Chair for Obstetrics and Director of the Division of Maternal-Fetal Medicine, University of North Carolina School of Medicine; and Dr. Michael Lu, Associate Administrator, Maternal and Child Health, for the federal Health Resources and Services Administration.

The purpose of the briefing was to educate congressional lawmakers and their staff about how pregnancy often provides great insight into the future health of the mother by identifying such conditions as future obesity and metabolic disorders such as diabetes, hypertension, and vascular disease.

 

Dr. Saade discussed the risks associated with various pregnancy conditions and the opportunity these afford for early interventions. He specifically focused on preeclampsia and preterm delivery. In regard to preeclampsia, he noted a lower rate of maternal survival over time among women who experienced the condition during pregnancy and a higher - up to four times higher - risk of hypertension later in life. In addition to the elevated risk for hypertension, studies have found that women who experienced preeclampsia are twice as likely to have heart disease or stroke. One study Dr. Saade cited found that preeclampsia presents a greater risk for cardiovascular death than other risk factors including age, weight, smoking, or fetal growth.

 

Dr. Saade also highlighted that pregnancy weight gain increases the risk of obesity eight to ten years later, particularly if pregnancy weight is not lost within six months. He also observed that breastfeeding decreases the obesity risk four-fold. He noted that breastfeeding has many benefits for the mother as well as the child, citing studies regarding less obesity, less hypertension, less diabetes, lower lipid levels, less myocardial infarction, and less type 2 diabetes among mothers who breastfeed. Dr. Saade then discussed how gestational diabetes is a precursor to type 2 diabetes later in life. He said that, while all women are screened for gestational diabetes and those with gestational diabetes are screened six weeks postpartum, additional follow up is needed postpartum to monitor for type 2 diabetes.

 

Dr. Menard explained how early screening and identification of the health conditions highlighted by Dr. Saade and early intervention may improve outcomes, and ultimately, improve a woman's health. She presented potential interventions and solutions including education, lifestyle changes (weight, smoking, etc.) and regular screening. She noted that many women do not understand - or think of - the association between pregnancy health and later health, and many providers do not ask a woman about her pregnancy experience. Dr. Menard expressed support for educating patients and providers, and implementing sustained screening measures for women that last longer than six-months postpartum.

 

Dr. Lu, who administers the nation's Maternal and Child Health Program, noted that maternal mortality decreased by almost 99 percent during the 20th century, to rise again in the 1990s and early 2000s. By 2009, the maternal mortality rate was 16 percent, nearly double what it was in 1990. This was accompanied by a rise in maternal morbidity and increases in obstetric complications. Dr. Lu highlighted the five areas of priority focus for the federal Advisory Committee on Infant Mortality:

  • Improving women's health before, during, and after pregnancy
  • Improving the quality and safety of maternity care
  • Improving systems of maternity care, including clinical and public health systems
  • Improving public awareness and education
  • Improving research and surveillance

All of the briefing participants called for the development of clinical guidelines for additional postpartum health screenings and a public education campaign targeting both patients and providers, in addition to an increase in health care funding support for prenatal care, testing, and interventions. The participants expressed a need for an upfront investment if we as a nation are to improve pregnancy outcomes in future pregnancies, prevent long-term consequences of chronic diseases, improve long-term health for women, and lower associated health care costs.

HEALTH INFORMATION 
 
The risk of preeclampsia is higher in women with chronic hypertension (high blood pressure), but studies have shown that it is far safer to keep a woman's hypertension under control during pregnancy than to risk preeclampsia superimposed on top of uncontrolled chronic hypertension. The good news is there are many anti-hypertensive medications, and many of them have been successfully and safely used in pregnancy.

"For most drugs in the 2nd and 3rd trimesters, the indications for treatment outweigh potential risks. Treatment should be individualized to meet the specific needs of each woman," said Dr. Tom Easterling, director of the Foundation's medical advisory board. "A few drugs such as angiotensin-converting enzyme (ACE) inhibitors and angiotensin receptor antagonists (ARB) do have a potential for harm and are used only under very limited circumstances."
 
A good source of online information is www.mothertobaby.com, a service of the non-profit Organization of Teratology Information Specialists, dedicated to providing evidence-based information to mothers, health care professionals, and the general public about medications and other exposures during pregnancy and while breastfeeding.

 

It is important to be knowledgeable about your prescribed medications, and although you may read about them online, it is most important that you review all your medications and supplements with your pregnancy specialist. 
A team lead by Dr. Anne Monique Nuyt, a neonatal specialist and researcher at the Sainte-Justine Mother and Child University Hospital Center and University of Montreal, reported in the September 2012
Canadian Medical Association Journal that women who were born prematurely are more likely to have pregnancy complications than women who weren't.

Their study is the first to clearly show the impact of preterm birth (i.e., before 37 weeks of gestation) itself on pregnancy risks. They examined the data from all women born preterm between 1976 and 1995 and who had delivered at least one infant between 1987 and 2008.

"We took all women born preterm and selected twice as many 'at-term' women as representative controls for this study," Nuyt explained. There were 7,405 women in the born preterm group during the study period. "The findings show that just over one in ten pregnancies involves complications in mothers who were carried to full term. However, this figure rises to one in five for women who were born before 32 weeks of gestation."

As the rate of survival of preterm babies has increased significantly over the past 30 years, it is important for researchers to improve the understanding of the health risks for this increasingly large percentage of the population. This study indicates that as the number of surviving preemies increases, so does the number of complicated pregnanci
es within the health care system."

 

More details are available in Science News.

 

QUALITY PATIENT CARE

A longer article from the Preeclampsia Foundation will be posted by the Association of Women's Health, Obstetric and Neonatal Nurses (AWOHNN) in May. Here are the highlights. A survey or our members brought to light the following top 10 ways nurses can be and often, with our gratitude, have been sensitive and helpful to preeclampsia patients.
  1. Thank you for educating me to know the symptoms and how dangerous preeclampsia can be.  
  2. Thank you for being willing to listen and learn from the women you care for.  
  3. Thank you for staying alert so that common medical errors are avoided.  
  4. Thank you for being sensitive to our vulnerable emotional states.  
  5. Thank you for showering us with compassion and kindness.  
  6. Thank you for being aware that due to our complicated pregnancy we are at risk of having post-traumatic stress disorder.  
  7. Thank you for effectively communicating to your colleagues when you transfer our care to other nurses.
  8. Thank you for being honest with us.  
  9. Thank you for helping us and our families cope with loss or having a baby in the neonatal intensive care unit.  
  10. Thank you for remembering that we may be struggling with feelings of guilt for having failed at pregnancy.

The expert and compassionate care nurses provide to women who have preeclampsia is greatly appreciated and will be remembered for a lifetime. 

MEMBERS MAKING A DIFFERENCE
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has. 
~Margaret Mead

 

Many words come to mind when describing a volunteer: devoted, inspiring, passionate. But those words feel pale and generic when faced with the deep motivation and strength that makes up the members of the Preeclampsia Foundation's volunteer corps.

 

Volunteers come to our foundation for many different reasons: mourning the loss of a loved one. Mourning the loss of that "perfect" pregnancy experience. Celebrating their gratitude in having a new life. Honoring a loved one's experience which they can only hope to never personally understand. But they stay for one overwhelming reason. It is their desire that no woman and no family should feel as alone, insecure and frightened as one does when faced with an overwhelming health crisis like preeclampsia, HELLP syndrome or eclampsia. From improving prenatal education to engaging with health care providers to supporting families after their preeclampsia experience, our volunteers are a family who support impacted families through every step of the journey!

 

Last week many organizations celebrated National Volunteer Appreciation Week, but words are simply not sufficient to describe why we love our volunteers, because without them, this foundation would be nothing. We were started by "thoughtful, committed citizens," and we continue to push our mission forward through an ever-increasing number of those citizens.


VISIONARY LEADERSHIP 

  

WomenHeart: The National Coalition for Women with Heart Disease hosted the Wenger Awards in Washington, DC, on April 8 in recognition of those who have set a precedent in prevention, treatment and care of heart disease in women.

Abbott Vascular received the award for Excellence in Corporate Leadership for launching the Women's Heart Health Initiative (WHHI). In collaboration with the Society for Cardiovascular Angiography and Interventions (SCAI)-Women in Innovations (WIN) initiative, Abbott developed a unique program to encourage and to assist OB/GYN clinicians in screening their patients for cardiovascular disease risk factors to increase the chances of early detection of heart disease, particularly in women with a history of pregnancy complications.

The significance of this initiative was confirmed in 2011 when the American Heart Association added new recommendations to its guidelines regarding the importance of screening women for a history of pregnancy complications such as gestational diabetes and preeclampsia. 
MAY 2013
In This Issue
Letter from Executive Director
Pregnancy as a Window to Future Health
Hypertension Medications During Pregnancy
Pregnancy Complications Up in Women Born Preterm
10 Ways Nurses Help Preeclampsia Patients
Why We Love Our Volunteers
WomenHeart Wenger Award to Abbott Vascular
Add Your Pin to Our Pinterest Quilt
Thank You, National  
Promise Walk Sponsors!  
 
 
 
 
 
 
Upcoming Activities

May 1, 2013
1:00 pm ET

Empowered Patients w/ Elizabeth Cohen
Thursday, May 9, 2013
12 noon ET

Valuing Heart Health w/ SCAI
Thursday, May 16, 2013
1:00 pm ET

Research for Patients
Thursday, May 23, 2013
1:00 pm ET

ACOG Annual Clinical Meeting
New Orleans, LA
May 4-8, 2013

San Francisco, CA
May 15-18, 2013

Philadelphia, PA
May 19, 2013

Kuala Lumpur, Malaysia
May 28-30, 2013

Boston, MA



Her
e Are Some Year-to-Date Promise Walk Statistics:

44 Promise Walks (up 30%)
30% increase in individual participation
 
225k raised so far (up 13% from April 29, 2012 - almost half way to our 2013 goal)
 
40 state and local proclamations (37% increase)
 
75+ national and local sponsors
2013 Preeclampsia Awareness Month Proclamations 
 
Three members of Congress, Representatives Lucille Roybal-Allard (D-CA), Lois Capps (D-CA), and Gwen Moore (D-WI) supported the Foundation's successful petition for Preeclampsia Awareness Month to be added to the National Health Observances Calendar. On a state and local level, government proclamations have been secured across the country to raise awareness about preeclampsia and related hypertensive disorders of pregnancy.  

 

State Proclamations: 
Alabama, Colorado, Georgia, Illinois, New Jersey, Ohio, Oklahoma, Oregon, Pennsylvania, South Carolina, Texas, Virginia

 

State or County Resolutions: 
New Jersey (Senate), Pennsylvania (House), Pennsylvania (Senate),  
Virginia (House)
 
Local Proclamations: 
Addison, Texas
Albany, New York
Asheville, North Carolina
Birmingham, Alabama
Brielle, New Jersey 

Charlotte, North Carolina
Cherry Hill, New Jersey

Clark, New Jersey

Clifton Park, New York

Cohoes, New York

Colonie, New York 

Denton, Texas
Easton, Pennsylvania
Farmer's Branch, Texas

Livingston, New Jersey

Milburn, New Jersey

Morristown, New Jersey 

Oklahoma City, Oklahoma
Plano, Texas

Rensselaer, New York

Richmond Center, Wisconsin 

San Diego, California
San Jose, California

Schenectady, New York 

Scotch Plains, New Jersey

Springfield, New Jersey

Wausau, Wisconsin 

Union, New Jersey

Washington Township, New Jersey   

Mission Moment  
 
I am so happy to find this page, the foundation, and information about the walks! I had no idea that there were so many of us affected by preeclampsia. There isn't enough recognition of the struggles that we endured with this and not enough information given to women during pregnancy in many cases.

~ Carol Crawford (Community Forum) 
YTD Volunteer Hours

Our volunteers have
reported a total of

2,479

hours

Free Money

Many employers offer matching gifts against donations made by their employees. Be sure to ask if your company will match your gift of time or treasure. Last year, we received 

$16

thousand
dollars

 

from employer matching gifts. 

 

Make your donation  here.

 

     

 

SHARING THE AWARENESS   
In memory and honor of all those impacted by preeclampsia, eclampsia and HELLP syndrome.

Are you a Pinterest addict? Enjoy expressing your life experiences visually? Then join our 
2013 Virtual Memorial and Survivor Quilt.

The Virtual Quilt board is a compilation of images from any individual who wants to contribute in honor or in memory of loved ones impacted by preeclampsia, HELLP syndrome, or other hypertensive disorders of pregnancy. Share your feelings and experience with preeclampsia through pin art!


Participate in the Pinterest quilt in 3 easy steps:

(1) Create or choose an image with a personal significance to you and your pregnancy experience. It might be a personal creation, a photograph, or a quote.

(2) Pin the image to one of your own boards and tag the Foundation in the comments by typing @Preeclampsia, or if you don't have a Pinterest account, send an email with your image to Director of Community Relations Laney Poye.

(3) We will re-pin your tagged pin onto the Quilt board within 48 hours of being tagged, as you join other survivors and their families to create a work of beauty and unity.

At the end of May, Preeclampsia Awareness Month, we will be doing something very special with the Virtual Quilt board, so the more pins, the better!
Newsletter Contributors
Julie Allen
Debra Bingham
Deborah Bush
Angela Little 
Laney Poye
Eleni Tsigas

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