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The Preeclampsia Registry™ Goes Live
We are excited to announce the launch of The Preeclampsia Registry™, a patient and family database designed to aid and accelerate preeclampsia research. Whether you are somebody who had preeclampsia, eclampsia or HELLP syndrome, or are a family member of somebody who did, we invite you to enroll and participate in The Preeclampsia Registry.
The Preeclampsia Registry™ is the first of its kind to focus solely on hypertensive disorders of pregnancy to bring together survivors, family members, and researchers from all over the world with the purpose of developing a comprehensive picture of preeclampsia and discovering preventions and treatments, including ones that will reduce its long-term impact.
The Preeclampsia Registry™ is a place to share your health and pregnancy history and even pose your own research questions, thus creating a significant resource for researchers to gather data and start new studies. Participation in any study is entirely optional.
To participate in The Preeclampsia Registry™ :
- Go to www.PreeclampsiaRegistry.org and click "Enroll Now." Provide your contact information and then check your email to get your unique username and password.
- Return to the website to log in, read and approve the consent form, and complete the online registry questionnaire. This can take up to an hour of your time, but may be completed in more than one sitting.
- Using "My Registry," which is available on the homepage after you log in, you can upload your medical records, provide updates on your health and your child's health, and submit your own research ideas.
In the future, you may be asked to sign a medical records release form to allow The Preeclampsia Registry Administrator to request your medical records.
After enrollment in the Registry, and with your permission, you can expect the following:
- To be contacted by email or phone at least once a year to update your information.
- Answer new questions as we or researchers have new ideas to explore.
- Your information will be combined with others' and shared with researchers, but your identity will not be shared. Your privacy remains our top priority.
- You may be contacted about other clinical trials being conducted that you may qualify for.
- You may be contacted about donating a sample of blood, tissue, or other biological specimen. (If you decide to donate a sample, you will need to provide separate consent.)
We appreciate your continued support to help us accelerate our understanding of preeclampsia. If you have any questions, please email our Research Coordinator, Alina Brewer, at Registry@preeclampsia.org or call us at 321-421-6957.
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! Warm Regards,
Eleni Tsigas, Executive Director
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Iowa City is a special place, offering big-city amenities along with small-town hospitality. Home of the University of Iowa, it has long served as a locus for culture, education, variety and fun. This year's Saving Grace fundraising event, on October 18, from 6:00 to 10:00 pm CT, will occur immediately after this year's regional and national Continuing Medical Education (CME) event, held in conjunction with the University of Iowa Hospitals and Clinics.
At this CME event, more than 200 of the nation's top clinicians will convene under one roof to learn about preeclampsia. Presenters will include the headliners in hypertensive disorders of pregnancy (Dr. Ananth Karumanchi, Dr. James Martin, Dr. Thomas Easterling, and more). The day-long national symposium is titled: "Controversies in the Care of Women with Preeclampsia: A National Debate."
 This year, Saving Grace -- A Night of Hope will be a more relaxed, business-casual-dress type of affair, with 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 invited to sit at tables and enjoy scrumptious desserts during a special program, including featured entertainment and the annual Foundation award presentations.
Entertainment will include comedian John Bush and the Nova Singers, a 20-voice ensemble with a nation-wide reputation for expressiveness, virtuosity and innovative programming. The site of this year's Saving Grace event is the Coralville Marriott Hotel. Heading the planning committee and your hosts for this event are John and Brenda Warner of Walcott, Iowa, and Drs. Mark and Donna Santillan of the University of Iowa Carver College of Medicine. Dr. Mark Santillan is a researcher in the field of preeclampsia and winner of a Preeclampsia Foundation Vision Grant in 2012. Many of you know the Warners from their years of volunteer service on behalf of the Preeclampsia Foundation and YouTube video first shown at Saving Grace in 2009. The Warners' daughter, Shelly, died in January of 2005, one week after giving birth to their first grandchild. Shelly was only 25 years old, a fifth grade teacher, and in good health up until the moment preeclampsia suddenly came over her. She died from a severe complication of preeclampsia called HELLP Syndrome. "In remembering Shelly's bubbly and lively spirit, we want the atmosphere of this event to reflect that spirit. Yes, we know there will be a time for tears, as we will also need to reflect on the reason(s) this event is taking place," said John Warner of the Saving Grave Planning Committee and one of the event's hosts. "We've envisioned having this event in Iowa for nearly three years so that all those who have been so supportive over the years of our efforts in the Davenport Quad Cities can have the opportunity to experience this event 'in their own back yard.' And, given all that the University of Iowa Hospitals and Clinics tried to do to save Shelly's life, and their ongoing efforts in preeclampsia education and research, it's a perfect fit!"
The Warners and Santillans want everyone in the Preeclampsia Foundation community and their guests to know that ALL are welcome to Saving Grace -- A Night of Hope. This will be a time for sharing, socializing around a common cause, and raising funds to help make a difference.
Travel and accommodations planning tips are posted on SavingGrave.Preeclampsia.org . "So come one and all, from all over the country, and enjoy our genuine Midwestern hospitality," said John Warner. "Meet others who have been affected by preeclampsia, their families and friends, and Preeclampsia Foundation leadership. So often, we who have been deeply and dramatically touched by preeclampsia, are in need of fellowship with those who care. Here's a wonderful opportunity to make new friends for life. We are really excited about this year's event and the relaxed, fun occasion this promises to be."
Purchase your tickets online now: $50 (standard) or $100 (VIP), and meet us in Iowa on October 18 for a memorable, meaningful evening.
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Preeclampsia Foundation an Official CFC Charity
If you are a Federal employee, please Give to the Preeclampsia Foundation via the Combined Federal Campaign (CFC) by December 15. The Preeclampsia Foundation's CFC number is 99819.
The mission of the Combined Federal Campaign (CFC) 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 Preeclampsia Foundation is one of the nonprofits that benefits from the CFC program. If you are a federal employee, we encourage you to give to the Preeclampsia Foundation between now and the December 15 CFC program deadline for 2013. To request a CFC Charity pledge form, please contact your local CFC office. Use CFC number 99819 when giving to the Preeclampsia Foundation.
The CFC is the world's largest and most successful annual workplace charity campaign, with almost 200 CFC campaigns throughout the country and overseas raising millions of dollars each year. Pledges made by Federal civilian, postal and military donors during the campaign season (September 1 - December 15) support eligible non-profit organizations that provide health and human service benefits throughout the world.
The charities that qualify for the CFC program must meet strict eligibility standards so the Preeclampsia Foundation is proud to be selected.
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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 our 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.
In 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.
Investigators interested in our Study Participant Recruitment Services should contact the Preeclampsia Foundation at info@preeclampsia.org.
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2013 Vision Grant Recipients
We are pleased to announce the award of two $25,000 Preeclampsia Foundation Vision Grants. The following recipients will each receive a Vision Grant for $25,000 to support their research in 2014.
Dr. Ana Sofia Teixeira de Cerdeira is currently a Research Fellow at the Beth Israel Deaconess Medical Center/Harvard Medical School. Dr. Cerdeira obtained her MD degree and started her residency in Obstetrics and Gynecology in Portugal. After receiving a Fellowship from the Gulbenkian Programme for Advanced Medical Education, Dr. Cerdeira moved to the United States to pursue a PhD in the field of Preeclampsia. Her goal is to better understand the underlying mechanisms of this disease and translate the research findings in the clinic. She is currently working on the immune mechanisms (NK cells and Tregs) of regulation of placentation in health and preeclampsia.
 Mandy Bell, PhD, RN, is currently a post-doctoral scholar at Magee-Womens Research Institute in the University of Pittsburgh School of Nursing. She obtained her Nursing and PhD degrees from the University of Pittsburgh School of Nursing. Her research is focused on soluble endoglin (sENG), a protein that is increased in the blood of most women with preeclampsia. Her study is designed to clarify the role that sENG plays in preeclampsia by investigating if differences in the genetic code of the endoglin gene and related genes account for increased sENG in women with preeclampsia.
About the Vision Grant Award Program: According to the World Health Organization, preeclampsia is one of the least funded areas of research, especially when considered against Disability Adjusted Life Years (DALYs). The Preeclampsia Foundation's Vision Grants fund medical research pertaining to the pathophysiology, diagnosis, and treatment of hypertensive disorders of pregnancy.
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Last month, we posted a lengthy article titled Screening Tests for Preeclampsia. On August 14, a press release from PerkinElmer announced the launch of its new screening test for early onset preeclampsia, Preeclampsia Screen™ | T1. This month we posed questions to PerkinElmer Labs/NTD. These are the answers we received to five of the questions, which are representative of the questions you asked us.
How much will the screening test cost?
The list price of the test is $495. This will be billed to a patient's insurance, if available. If the test is not covered by a patient's insurance and the patient takes advantage of applicable payment options, they can expect to spend approximately $200 out of pocket for the test.
Will my insurance cover it?
This is uncertain, at this time, as the screening test just launched on August 1, 2013. It is our plan to submit to insurances and work with them on reimbursement for these new claims.
Will it be available everywhere in the U.S., and can any doctor or midwife order it for me?
It must be ordered by a qualified health care provider who is able to order laboratory tests and who has set up an account with PerkinElmer Labs/NTD. It is available to all qualified healthcare providers in the country.
Is it available outside the US?
Yes. Samples can be received at PerkinElmer Labs/NTD from outside the U.S., as long as they conform to all sample and shipping requirements, including any international regulations.
Will the screening test tell me when I might start getting sick, if I'm going to get PE?
The test will not tell you or your healthcare provider when you may begin having symptoms of preeclampsia. What it can tell your healthcare provider is whether or not you are at increased risk of developing early onset preeclampsia, which is preeclampsia that results in the delivery of the fetus before 34 weeks gestation.
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Our Foundation has a growing mission to emphasize the need for monitoring and care for hypertensive moms postpartum for physical AND emotional needs. We asked our Facebook Followers these questions, in the wake of THE DAILY BEAST's recent article: "Why Are America's Postpartum Practices So Rough on New Mothers?"
- Are the US's postpartum practices too trying on new moms?
- What did you think of your postpartum experience?
- What would you have done the same or differently?
We received multiple comments on Facebook and then set up a discussion in the Community Forum on our website. Many of you had both good and bad experiences during your postpartum period. For example:
I was lucky to have my mother in law's support for two months. Severe postpartum PE took nearly all the wind out of my sails.
I spent the 60 days after an emergency c-section under general anesthesia going back and forth to the NICU to visit my child. Restful, recuperative--no. So stressful.
We heard reports of going home from the hospital after preeclampsia and delivery only to have to return days later with postpartum preeclampsia. We heard reports of blood pressure becoming a chronic problem after delivery and concern over lifetime blood pressure challenges. And, there were reports of grief and depression. For example:
At my 2-week postpartum checkup, my doctor said everything looked fine. The very next day I was in the ER with kidney failure and congestive heart failure.
What's not fair is losing my baby due to severe preeclampsia and then not only do I not have a baby here with me, but now I have blood pressure issues. Constant reminder of my baby being gone because of preeclampsia. On top of high blood pressure has been everlasting depression.
One thing we know from the tens of thousands of posts made by participants of our Community Forum is that you really appreciate the support of others who have had similar experiences. Another thing we know is that you like the advice of other moms, not just medical experts. We recommend you visit the conversations in Ask the Experienced, and share your postpartum experience at Postpartum Experiences in the US: Are they too trying?
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Read about our Boston Mission Family below and meet them at the historic Chestnut Hill Reservoir in Boston on September 15!
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The DiGuardias will make strides in Boston, in memory of their daughter Emilia.
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Emilia Marie DiGuardia was born on the afternoon of Saturday, June 19, 2010 at 29 weeks gestation weighing just 1 lb 11 oz due to preeclampsia. As tiny as she was, she cried a loud-yet-squeaky call to the world that Emilia Marie DiGuardia was here, and she was here to leave her mark. Emilia spent 13 days in the Neonatal Intensive Care Unit (NICU) at Beth Israel Deaconess Medical Center in Boston fighting for her life and watched over by her loving parents Danyelle and Christopher. Over the course of these 13 days they were able to cheer for their little champion; at every visit to see her, Danyelle & Chris were always amazed at how well she fought. She was a feisty little girl who captured all the hearts of those with whom she came in contact. Her short life left an indelible mark.
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Thank You, National
Promise Walk Sponsors!
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2013 International Federation of Placenta Associations Conference
Whistler, British Columbia, Canada September 11-14, 2013 NASSHP 2013 Scientific MeetingMontreal, Quebec, Canada September 13-15, 2013 North American Society of Obstetric Medicine Annual MeetingProvidence, RI September 20-21, 2013 Advances in Prenatal Molecular DiagnosticsBoston, MA September 23-24, 2013 Preeclampsia Foundation Google+ Hangout with Pregnancy MagazineSeptember 25, 2013 International Society for the Study of Hypertension in Pregnancy (ISSHP) First International Conference Surabaya, Indonesia September 30 - October 1, 2013 Preeclampsia Foundation Twitter Chat with AWHONNOctober 3, 2013 Could Sybil Have Died Today? Preeclampsia in 2013 (CME)Cedars-Sinai Medical Center Los Angeles, CA October 8, 2013 University of Iowa Women's Health Conference: Controversies in the Care of Women with PreeclampsiaIowa City, IA October 18, 2013 Saving Grace - A Night of HopeIowa City, IA October 18, 2013
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Did you give a gift in 2012 in memory or in honor of a loved one? Look for your name in the Foundation's 2012 Annual Report, which we have posted on the Foundation's website.
As you read the Annual Report, you will see some mission highlights from 2012, a financial report, and a list of the Tribute Gifts received between January 1 and December 31, 2012. Every attempt has been made to accurately list those being remembered and honored. Please contact us if an error or omission has occurred.
The year 2012 stands out as a year when the Foundation's advocacy and educational initiatives to improve awareness and health care practices were truly influential. Your gifts enabled that to happen and for that we are very grateful.
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Mission Moment
I received excellent care before I had my daughter but there seemed to be a serious lack of concern for my emotional needs after. There is a lot of trauma and turmoil after having preeclampsia, delivering early, and the stress of having a child in the NICU. The impact of preeclampisa lasted long after delivery in my case and this seems to be consistent with other preeclmapsia survivors I have met. I'm glad the foundation is looking to bring attention to this!
~Erin Regan-Gearns, Facebook post
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YTD Volunteer Hours
Our volunteers have
reported a total of
6,173
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Your Support Equals 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.
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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
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