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We're counting down the days to Saving Grace - A Night of Hope, and there's still time for you to meet us in Iowa!

 

This year's Saving Grace-A Night of Hope is only 9 days away -- on Friday, October 18, from 6:00 to 10:00 pm, in Iowa City, Iowa. It will take place immediately after this year's day-long Continuing Medical Education (CME) event, held in conjunction with the University of Iowa Hospitals and Clinics. 

 

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

 

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

 

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

Registry Off to a Great Start

 



The launch of The Preeclampsia Registry™ is off to a great start. Three hundred individuals have entered information that will help generate hypotheses and test ideas. Investigators are already planning research studies that will use this unique data set. Nowhere is it more true than in a disease registry that every person makes a difference. We look forward to more of you sharing your pregnancy history and longer term health information. 
 
On another note... It's been a while in coming but we are excited this week about the November publication of a patient study initiated and funded by The Preeclampsia Foundation in 2008 and with data analyzed in 2011. The paper, "Prenatal education is an opportunity for improved outcomes in hypertensive disorders of pregnancy: results from an Internet-based survey," was published in the November issue of the Journal of Maternal Fetal Neonatal Medicine. Its authors are three preeclampsia researchers: Dr. Anne B. Wallis, Dr. Audrey F. Saftlas, and Dr. Baha M. Sibai, and the Foundation's Executive Director, Eleni Z. Tsigas. Their paper reports on our 2008 survey of 754 women who visited the Preeclampsia Foundation website, in which we found that most received prenatal checkups and regular screenings, but only 42% "definitely" recalled specific education about preeclampsia and only half "fully understood" the explanation. However, 27 of the 169 women (75.0%) who understood acted on this knowledge by promptly reporting symptoms and complying with treatment. Of the 46 who did not remember some or any of the education, only 3 (6.0%) took any action. The difference between these two groups is highly significant. The authors conclude that knowledge enables women to spot signs and symptoms, leading to earlier diagnosis and management, and reduced morbidity and mortality. They propose the adoption of formal guidelines on preeclampsia education.

Note: Survey studies like this one can be accelerated through our registry of preeclampsia survivors, as they will be invited to participate in future surveys. 

Feedback from last month's Expectations newsletter indicated your enthusiasm to support research. The Boston Promise Walk Facebook page proclaimed "The dollars we raise here in Boston go to supporting research initiatives like those highlighted in the PF's Expectations newsletter this month. Did you know that there is major preeclampsia research right here in numerous institutions and corporations in our own community? Really cool stuff."
Johanna Aiken and her daughter Macy

Johanna Aiken is the 2013 recipient of The Preeclampsia Foundation's annual Hope Award for Volunteer of the Year. This prestigious award will be presented to Aiken at our annual benefit dinner, Saving Grace - A Night of Hope, on Friday, October 18, 2013 in Iowa City. The award recognizes an individual who epitomizes the true spirit of volunteerism and has made significant contributions to the Foundation in the past year.

 

"Johanna has been an instrumental member of our volunteer leadership, helping to build the presence of our signature public awareness event, The Promise Walk for Preeclampsia™," said Director of Community Relations Laney Poye. "For the past three years, she dedicated herself as the Central Regional Coach and helped build numerous provider and patient education alliances in her local Chicago community. Johanna has been a tireless advocate not only for those who have been affected by preeclampsia, but for those who aren't here to speak for themselves."

 

This week, we asked Johanna about her experiences with preeclampsia and The Preeclampsia Foundation.

 

What was your experience with preeclampsia?
I am a HELLP Syndrome Survivor. I was diagnosed at 39 weeks while in active labor by the nurse admitting me. I had heard of Preeclampisa before and associated it with high blood pressure and bed rest, but had never hear of HELLP Syndrome. My symptoms came on in a matter of days, but I was unaware that they were anything other than normal symptoms of pregnancy. Thankfully, it was diagnosed early and managed successfully, so my daughter and I both made full recoveries.

Why do you volunteer for the Preeclampsia Foundation? 
To spread awareness of the signs and symptoms to other pregnant women and women who become pregnant. I also volunteer to help educate health care providers about the Preeclampsia Foundation's existence and the many resources we offer to them, as well as their patients. In the four years I have been volunteering, I am still baffled by how many health care providers do not proactively talk about Preeclampsia, HELLP Syndrome and other hypertensive disorders to their patients, as well as how many providers have never heard about the Foundation as a resource. 

What does it mean to you to be awarded the 2013 Hope Award for Volunteer of the Year?
It is a tremendous honor. While I am giving my personal time volunteering to raise awareness for providers and patients, I too feel that I have been given a gift that I must pass forward to others. My daughter and I both survived and are healthy. Many people's stories don't have such happy endings.    

What has been your most gratifying moment as a Foundation volunteer?
My co-worker was pregnant and knows I am involved in the Foundation. I had mentioned the signs and symptoms to look out for and in her last month of pregnancy began having some of them. As a result, she contacted her doctor and was carefully monitored, then induced two weeks early when her blood pressure got too high. The most gratifying thing about being a volunteer is knowing that I am directly helping others prevent infant and mother mortality by contacting their provider as soon as signs and symptoms appear.
  
What are your continuing goals for your work with the Foundation in the near future?
I love being involved in the Chicago Promise Walk, and helping the walk coordinators throughout the Central/Midwest region as a regional coach. I'm able to provide guidance and advice on how to plan and carry out their own walks, spreading awareness as well as raising money that goes towards patient and provider education and research grants to study the causes of preeclampsia, HELLP Syndrome and other hypertensive disorders.
 
Thank you, Johanna Aiken, and our many other dedicated volunteers!
Are You Eligible for this Research Study?


You may be eligible for this study if you have experienced preeclampsia and delivery at or before 34 weeks in either of your 2 most recent pregnancies, and you are currently pregnant. This is a study of a medication that may be useful in preventing recurrence of preeclampsia in women at high risk for recurrence. This is an FDA-approved medication for the treatment of high cholesterol, as well as for decreasing the risk of heart attack and stroke. In this study, the medication is experimental because it has not been approved for the prevention of preeclampsia in pregnant women. This study will evaluate the effects of this medication on chemicals in the blood that are associated with preeclampsia, the safety of the medication, and how the body handles and responds to the medication.

Participation in this study will involve collecting information from you and your medical records, physical exams, blood and urine collections, monitoring for side effects, and taking the study medication.

 

Seattle-area: For more information about participation, please contact the University of Washington Medical Center study coordinator Navi Gill, at 206-616-9902 or by e-mail at opru@u.washington.edu.

 

Indiana-area: If you are interested in learning more about this study, please contact the study coordinator Amy McCormick at  317-630-8816 or amymcco@iupui.edu.

 

Pittsburgh-area: If you are interested in participating or learning more, please contact the study coordinator, Dawn Fischer, RN, at either 412- 641-5194 or fiscde@mail.magee.edu.

 

Investigators interested in our Study Participant Recruitment Services should contact the Preeclampsia Foundation at info@preeclampsia.org.

 

Related articles shed light on why we need clinical trials for preeclampsia research and provide a thoughtful safety analysis of a potential treatment for severe preeclampsiaIn addition, ClinicalTrials.gov is a registry of most federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. 


The ACOG News
reported that as a result of the US Affordable Care Act, in 2014 and thereafter:
  • An estimated 8.7 million American women currently purchasing individual insurance will gain coverage for maternity services.
  • Insurance companies in the individual and small group markets will no longer be permitted to charge higher rates due to gender or health status. 
The new law establishes a series of new benefits and protections, some of which are particularly important for women and children. BabyCenter.com provides an easy-to-understand and full report on how the Affordable Care Act affects pregnant women and their families. We're curious...how do you think it will affect you or other women with complicated pregnancies? Share with us at info@preeclampsia.org.  
OCTOBER 9, 2013
 
The Preeclampsia Foundation does not endorse any political philosophy.   

Upcoming Activities
 
 
Thank you for your fantastic Promise Walk support in 2013! Everyone's amazing dedication and hard work brought us just shy of reaching our $500,000 goal -- and there is one more opportunity this year to build upon this already impressive fundraising total. That's through Employee Matching Gift Programs.
 
So far, employer matching contributions donated during the 2013 Promise Walk season have totaled nearly $10,000! 
If you are a Federal employee, please consider giving to the Preeclampsia Foundation via the Combined Federal Campaign (CFC)  by December 15. The Preeclampsia Foundation's CFC number is 99819.
Your Personal Donations Equal Advancements
 
 

Science has gotten us closer, but there is still no known cause, definitive diagnosis, or treatment for preeclampsia. Your support funds the Preeclampsia Foundation's programs in research, education, advocacy and patient services. 
Mission Moment  
 
"Hi, I'm from Italy and unfortunately here this disease is not so well known. I suffered with preeclampsia-eclampsia at the end of my pregnancy and was going to die. Thank God everything went well for both for me and my lovely baby. Thanks for supporting us! Take care you all! Hugs." 
 
~Rachele Cereda, Facebook post 
YTD Volunteer Hours

Our volunteers have
reported a total of

6,454

hours


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