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Raising Awareness of Hypertension (H. Res. 1656) - Status: Introduced. Sponsor: Rep. Alcee Hastings (D-FL). Aims to increase awareness of hypertension and reduce its prevalence in the United States through education, research, community programs, culturally competent strategies, and efforts to reduce the excess salt content in foods. The resolution notes that women with high blood pressure are more likely to experience certain complications during pregnancy, including kidney and other organ damage, low birth weight, early delivery, stillbirth, and maternal mortality.

http://frwebgate.access.gpo.gov/cgibin/getdoc.cgi?dbname=111_cong_bills&ocid=f:hr1656ih.txt.pdf

 

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111th Congress, Second Session

Congress has adjourned until after the November 2nd election. For the next few weeks, members of Congress will be focused, almost exclusively, on campaigning for re-election. Congress is expected to return in the third week of November for a “lame duck” session - a post-election legislative session during which members convene to wrap up unfinished business before the end of the calendar year. Because these sessions include those members who failed to win reelection and some who are retiring, lame duck sessions are not usually very productive and can be very volatile and difficult to predict.

While the exact agenda for the upcoming lame duck session is still unclear, measures that will likely be taken up include a food safety bill and certain tax provisions. In addition, Congress must address how to fund the federal government for the next fiscal year as they have yet to finalize all of the various bills that fund current government services and programs, including funding for the Centers for Disease Control and Prevention and the National Institutes of Health.

Continue to check back regularly for feedback and insight on issues of interest before and after the election, during the congressional lame duck session and as the federal agencies continue to conduct business.

 

Tagged in: Advocacy Intervention
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The Preeclampsia Foundation announced today that Ms. Jill Siegel of Chicago, IL is the 2010 recipient of its annual Hope Award for Volunteer of the Year. This prestigious award will be presented to Ms. Siegel at its annual benefit gala, Saving Grace – A Night of Hope Around the World, on Saturday, November 6, at the Olympic Fairmont Hotel in Seattle, Washington. The award recognizes an individual who epitomizes the true spirit of volunteerism and has made significant contributions to the Foundation.

Eleni Tsigas, Executive Director of the Preeclampsia Foundation, said, “It’s hard to identify Jill’s most significant contribution as she has been instrumental in so many areas. In 2009, she served as our Saving Grace chair, organizing, motivating and arranging everything for our annual fundraising gala and throughout 2010 has done an overwhelming amount of work as our Director of Communications, including spearheading several new publications such as our Expectations newsletter and our 10th anniversary compendium.”

Nominations for the Volunteer of the Year award come from the volunteers themselves. A committee comprising former recipients and a member of the Board of Directors reviews the applications and scores them according to published metrics. These recommendations described Siegel as a tireless volunteer who is “passionate, works well with others…. a true leader, who recognizes people's strengths and talents and motivates them to use these assets to their best ability.”

Siegel suffered from severe preeclampsia and HELLP syndrome with the delivery of her daughter, Brooklyn, in 2004. She delivered Brooklyn 10 weeks early and suffered from multiple organ failure and a post-partum stroke. Upon “recovering” her neurologist told her she had been “the sickest person to leave this hospital alive.” She decided that she would mark her own recovery process by completing the New York City Marathon, which she did in November of 2006. During that time, she became acquainted with the Foundation and decided to turn her “recovery race” into a fundraising and awareness-raising effort. Her story was highlighted on Runner’s World website, calling attention to preeclampsia.

Since 2006, Siegel and her family have helped raise more than $190,000 to benefit the Foundation through her role as the 2009 Saving Grace Chair and co-coordinator of the 2010 Chicago “Promise Walk for Preeclampsia.” Jill Siegel is an award-winning urban planner who has taken a hiatus from her career in planning and economic development to support fundraising efforts at her daughter’s school. She is a native of Enid, OK and attended Agnes Scott College in Decatur, GA and Washington University in St. Louis, MO.

When asked to comment on her award, Siegel says, “I am so honored to be recognized by the Preeclampsia Foundation in this way. The commitment and passion behind this organization continues to amaze me and I am humbled to have been singled out among the many talented volunteers who give a portion of their lives to helping educate and save the lives of others.”

 

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What a whirlwind Walk season it has been! The final 2010 Promise Walk concluded just a week ago. This year, a newly formed National Walk Team (NWT) assisted coordinators
around the country in planning memorable and successful walks. The NWT also created a new and dynamic website (www.promisewalk.org) that enabled Walk Coordinators and participants to easily register and raise donations for their local Promise Walk.

More than 30 volunteer coordinators produced fabulous local events - 24 Walks across the U.S. taking place between April and August, including inaugural Walks in Atlanta and Chicago and adding a second Walk location in both California and Iowa. This volume represents a 60% increase over last year. The 24 Walks collected approximately $168,000, which is more than a 150% increase over 2009. There are many reasons for this increase: more walks, more volunteers, more people becoming aware, and the huge success of the new website.

Coordinators also did a fabulous job getting the media involved to raise awareness of preeclampsia. There were numerous online and local newspaper articles written, blogs posted, a radio broadcast in New Hampshire, and longer feature stories in Chicago, Iowa, Pennsylvania, and Wisconsin media. Coordinators took advantage of the Web 2.0 trend with a variety of social media outlets highlighting Walks everywhere.

All over the country, every person who attended or supported a walk deserves a special "thank you" from the Foundation, the NWT, and all those whose lives have been touched by preeclampsia. So... THANK YOU! Without our volunteers, sponsors, and participants, the Promise Walk couldn't have not just reached, but exceeded its goal!

National Walk Director Becky Sloan says she hopes to see more Walks across the country in 2011, at least one in every state. She commented, "We will have a new goal for 2011 and in order to reach it, we need volunteers - we need you! Walk season begins September 1 and concludes in June with the majority of walks taking place in May because May is dedicated as Preeclampsia Awareness month."

 

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Posted on in Research

Last month, a team from the University of Alberta reported in the journal Hypertension on a method to determine that a woman is at high risk of developing preeclampsia. While this method may or may not be developed into a screening test in the future, it confirmed that changes in the metabolism and the vasculature of women who go on to develop preeclampsia can be detected at 15 weeks gestation.

Two Preeclampsia Foundation members were involved in media coverage on the topic and we are very grateful to them for bringing a human face to the stories about preeclampsia. Because of the press conference and media efforts of the University, a lot of lay press picked up the story and we are fortunate that the Foundation was mentioned in several of those stories. The research findings while seemingly exciting to a lay public are far from commercial realization and would need more validation for most governmental oversight bodies (e.g., FDA). Our message of "cautious optimism" is a responsible middle ground at this early juncture. Read more here.

Also, a new study into changes in maternal weight between pregnancies was published in the journal Obstetrics and Gynecology by a team from the University of St. Louis Medical Center. It confirmed that women who lose weight after a preeclamptic pregnancy have a lower risk of preeclampsia in later pregnancies than women who maintain their weight or who gain weight. Losing weight may change the uterine environment and help encourage normal placental development. A link to the abstract and discussion among forum participants may be found here.

The National Institutes of Health announced that research shows taking vitamin C and E supplements early in pregnancy does not reduce the risk for hypertensive disorders and other complications during pregnancy.

An Irish study to be published in an upcoming issue of Hypertension shows that metabolites found in women's blood early in pregnancy may be able to serve as accurate predictors of preeclampsia. This is a significant breakthrough, as biomarkers for preeclampsia have not previously been very precise. Further studies on the topic are planned.

 

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Recipient to be honored in person in Seattle at Saving Grace!

It's time to recognize our hard working volunteers in a big way! We encourage all of you to thoughtfully consider nominating one of our volunteers for this distinguished honor.

To recognize the important role and valuable contributions of our volunteers, the Preeclampsia Foundation has established a Volunteer of the Year award, awarded annually to a member who epitomizes the true spirit of volunteerism. The award will be presented at “Saving Grace: A Night of Hope,” a benefit gala to be held in Seattle, WA. on November 6, 2010. The recipient will be provided with roundtrip airfare and a one night accommodation at the Fairmont Olympic hotel.

All volunteer members are eligible to be nominated however, members of the Foundation’s Board of Directors as well as paid staff and contractors who are financially compensated by the Foundation are not eligible.

An awards committee will be responsible for selecting the winner. The committee will consider the following guidelines when evaluating each nominee:

1. Teamwork – Nominee effectively collaborated in all activities and communications with a positive attitude and is respected by peers, volunteers and community leaders.
2. Advocacy – Nominee represented the Foundation with unwavering support and strives to present the organization favorably in all endeavors.
3. Need - Nominee contributed a needed service to the Foundation.
4. Initiative - Nominee initiated new programs or activities and used new methods to solve problems.
5. Achievement - Nominee accomplished desired results.
6. Impact - The activity or service produced positive changes and provided examples for other areas of the Foundation.
7. Time - Amount of time devoted to the activity or service was significant.

All nominations should be submitted to VOY@preeclampsia.org. Please summarize the reasons you have nominated your candidate in less than 250 words. Consider addressing the above categories in your summary. You may nominate more than one candidate. All nominations must be submitted no later than Friday, September 24.

The candidate that is selected will be notified via phone and email by Friday, October 1. A post online will be made after the recipient is notified. All travel arrangements and hotel accommodations will be handled by the Foundation immediately thereafter.

Please consider nominating a deserving member who has provided outstanding effort with the Foundation this year. We are fortunate to have such a large pool of dedicated and valuable volunteers to choose from. Good luck deciding on your nominations!

 

 

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Research into preeclampsia and its relationship to the long-term health of mother and baby reveals both good news and bad news for preeclampsia survivors.

Evidence is unequivocal now that women who have experienced preeclampsia, particularly severe or early onset preeclampsia, are at a significantly increased risk for cardiovascular problems later in life compared to women with a history of healthy pregnancies. The "take home lesson" for preeclampsia survivors is to establish a healthy lifestyle (weight loss, exercise, no smoking) and to discuss cardiovascular assessment and follow up with your health care provider.

"There are very few identified risk factors for later life heart disease in women; preeclampsia is one of the few warning signs we'll get and we should take advantage of it," explained Executive Director Eleni Tsigas.

One study demonstrated that women who have a history of preeclampsia experienced an increased risk of cardio-vascular health hazard equivalent to that of someone who has smoked for much of her life. That is the bad news.

As Dr. James Roberts reported at the Preeclampsia Foundation Patient Symposium, October 2009, "There is also some good news!" Although not all studies agree, most have shown a reduced risk of breast cancer in women who have had preeclampsia, as much as 15-20% lower risk, with the largest reductions in pregnancies with boy babies.

Dr. Anne Gingery of the Department of Physiology and Pharmacology at the University of Minnesota Medical School in Duluth has investigated how specific factors released from the placenta of women with preeclampsia inhibit the growth of breast cancer cells. Her research focuses on two factors released during preeclampsia: sFlt-1, a soluble version of a protein called VEGF (vascular endothelial growth factor), that regulates the growth of beta cells, and soluble endoglin, a co-receptor for transforming growth factor (TGF) beta cells. Gingery's research, looking at rat models, found placental factors released into the blood stream that may possess anti-cancer properties. She proposes that soluble endoglin inhibits cell growth by reducing the signaling of the TGF pathway, an important factor in breast cancer development and progression.

Other studies have found that breast cancer risk following preeclampsia varies by the gender of the baby delivered. A team in Norway that studied more than 700,000 women through the Cancer Registry of Norway determined that the risk of breast cancer was reduced even more if the woman delivered a son, rather than a daughter (relative risks of 0.79 vs. 0.94). If the preeclamptic pregnancy resulted in a premature birth, the risk reduction from the birth of a son or daughter grows more dramatically - by about four times. These results suggest that the effect of preeclampsia may be attributed to factors associated with the particular pregnancy rather than an underlying biological trait of the mother.

However, cautions the Foundation's medical board, a "reduced risk" does not let a woman off the hook for monthly breast self-exams and regular mammograms. "The risk is reduced, but not enough to avoid the need for awareness and diligent health care," said Roberts.

 

 

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Posted on in Research

Vitamin D and Microchimerisms:

Could the sun really have something to do with preeclampsia?
"Maternal vitamin D deficiency may be an independent risk factor for preeclampsia. Vitamin D supplementation in early pregnancy should be explored for preventing preeclampsia and promoting neonatal well-being," reads a paper published in the Journal of Clinical Endocrinology & Metabolism in 2007. Although some of us who had our babies in, say, Portland, Oregon, where the sun rarely shines, would love to claim Vitamin D deficiency, other preeclampsia survivors sweltered under the Arizona or California sun. If you think this might be a possible therapy to explore, talk to your health care professional and check out the discussions in our Community Forum on this topic.

Micro-what?
Researchers have found that women with preeclampsia, which causes high blood pressure in late pregnancy and can kill both mother and child, had five times the microchimerism of healthy women. Fetal cells, it turned out, are complex characters. A chimera is an organism with DNA from different sources, which of course is what fetal cells are, since their DNA derives from both mother and father. Read the article, The Yin-Yang Factor, published in Stanford Medicine Magazine, if you weren't already convinced that preeclampsia is a really complex disease.

Patent issued for preeclampsia diagnostic test
A press release from Miraculins announced that the United States Patent and Trademark Office has issued US Patent 7,754,495 entitled "Methods for Early Diagnosing of an Increased Risk of Preeclampsia." Previous issues of Expectations discussed this company's development of a diagnostic marker for preeclampsia.

 

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<p style="margin: 0in 0in 4.5pt;"><span><span style="color: #000000;"> </span></span> Although the literature is scant, research has shown that lack of patient information is correlated to poor health outcomes.  Our own research shows that fewer than half of pregnant women are educated about the signs and symptoms of preeclampsia by their health care providers.  (As an aside, we've been working with epidemiologists at the University of Iowa to conduct deeper analysis of our data; this research has been deemed compelling enough that we'll be sharing our findings via an oral presentation at the ISSHP World Congress in Melbourne, Australia.)</p>
<p style="margin: 0in 0in 4.5pt;">Thus, patient education is high on our list of priorities. This includes involving a broad spectrum of health care providers in this effort.</p>
<p style="margin: 0in 0in 4.5pt;">There are many occasions where pregnant women come in contact with health care professionals - childbirth educators, doulas, midwives, and the physicians and nurses they see in clinics, hospitals and offices.  Each of these encounters is an opportunity to provide and reinforce information about the warning signs of preeclampsia, why it's important to be attentive to those signs and what action to take. This is our "Continuum of Care Campaign," recognizing that, besides physicians, other care providers may have more time, skills and orientation to provide effective patient education.</p>
<p style="margin: 0in 0in 4.5pt;">Thanks to a grant from the Beckman Coulter Foundation, we have undertaken several strategies in 2010 to focus on patient education along this continuum of care. We're using a beautiful and professional display unit to exhibit at four medical conferences this year. In addition to providing our patient education materials to nurse-midwives (ACNM) , doulas (DONA), childbirth educators (ICEA) and women's health and obstetric nurses (AWHONN), we are also using these and other events to survey health care professionals about their attitudes and behaviors with respect to preeclampsia education for patients.  We've already collected over 200 survey responses and expect by the end of the year to have well over 1,000, enough to analyze the data and prepare our findings for publication in 2011.</p>
<p style="margin: 0in 0in 4.5pt;"><br />In June, we attended the first of the conferences in Washington, DC. Our booth enjoyed very high traffic from hundreds of interested nurse-midwives, most of whom had not heard about the Preeclampsia Foundation, but were thrilled to learn of our resources.  The "prescription pads" were a huge hit as they saw those as easy, simple ways to send their patients home with the basic signs and symptoms, a place to capture the patient's vitals (BP/proteinuria/weight gain), and encourage her to seek additional credible information at <a href="http://www.preeclampsia.org">www.preeclampsia.org</a>. Special thanks to new volunteer Kelly Adams who helped staff our booth. If you're interested in volunteering at a future conference, please contact Kara Boeldt, Director of Volunteer Development.</p>
<p style="margin: 0in 0in 4.5pt;">Finally, our brochure campaign will be getting a fresh boost of energy under the guidance of Johanna Aiken, our new coordinator. (And many thanks to our outgoing coordinator, Angie Grospitch, who ably supervised this program for almost two years!) This campaign enrolls volunteers across the country to promote the usage of our patient education resources - brochures, refrigerator magnets, DVDs and symptom "prescription pads" - in various health care settings and along the continuum of care. Johanna will also be working with local and national organizations to secure additional endorsements and distribution channels for the materials. If you're interested in turning the numbers around so that all pregnant women know what warning signs to be diligent about, please contact Johanna Aiken immediately.  We need education warriors!</p>
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Blood pressure cuffs, urine dipsticks, and the scale: for decades, these simple tools have aided health care providers in the detection of preeclampsia. As a woman's pregnancy progresses, her prenatal visits come closer together, so that her weight gain, urine, and blood pressure readings can be monitored for signs of the disorder. However, this system isn't perfect. While preeclampsia most frequently occurs at term, it can sometimes strike much earlier. The disorder can sometimes progress rapidly between appointments, or the warning signs can be too subtle to trigger alarm.

But soon, clinicians may have another method for detecting preeclampsia: a reliable screening test that can spot changes in the bloodstream relatively early in pregnancy, warning healthcare providers when preeclampsia may occur before term.

In the past eight years, a substantial amount of preeclampsia research has focused on proteins found in blood known as soluble factors. The chain of events that will eventually lead to preeclampsia seems to begin quite early in pregnancy -- in fact, during the implantation of the placenta. Something disrupts the implantation process. As pregnancy progresses, the placenta intermittently runs short of oxygen, and the levels of many of these soluble factors start to vary from normal.

One of these proteins raises maternal blood pressure and inhibits Placental Growth Factor, or PlGF. Another protein, called soluble endoglin (sEng), also affects blood vessel function and is particularly elevated in HELLP syndrome. The hope is that by measuring levels of PlGF and sEng, the ratio between them, and the rate at which they are changing, clinicians can detect preeclampsia much sooner, well before symptoms appear. At that point, monitoring and management of that pregnancy would become more aggressive, in expectation that she will develop the symptoms of the disease as pregnancy continues.

Several companies in the United States and abroad have invested in these and other biomarkers to develop diagnostic or screening tests.

Miraculins Inc., a company that develops diagnostic tests from academic research and further adapts them for clinical use, first acquired the rights to an ensemble of 35 soluble factors, including endoglin, from Mount Sinai hospital. On January 7, they announced a new partnership with Inverness Medical Innovations Inc., a company that manufactures and markets such tests worldwide. "It was just a natural fit for us," said Ferran Prat, Vice President of Oncology and Women's Health for Inverness. "We're [already] launching a PlGF test in Europe, where the regulatory environment is different."


Christopher Moreau, President and CEO of Miraculins, plans to launch the first US ELIZA-based test through a few labs within the year, under a FDA exemption called an ASR, to build data while progressing towards full FDA approval. One way to apply the test would be to take a blood draw around the 24th week of pregnancy and compare it with first trimester bloodwork. This could detect changes that warn that a woman is likely to develop early preeclampsia, before 35 weeks gestation. The test could likely also be used as an instant diagnostic confirmation that a woman less than 35 weeks pregnant is suffering from preeclampsia and needs immediate treatment. The test itself only requires basic infrastructure and when the costs of the phlebotomist and shipping, if needed, are factored in, the total price will likely be $100- $200.

Preliminary serum and plasma studies indicate that the test will have very high sensitivity and specificity, which means it will capture essentially all of the women who will go on to develop early preeclampsia, plus a small number of women who will be monitored more closely but won't go on to develop the disease before 35 weeks gestation.

And there's hope for a first trimester screening test within a few years. "We're delighted to be able to move forward with developing this test," said Moreau. "Maternal and child health has been terribly neglected, and the opportunity to do something positive for women in this position, and save lives, is just tremendous."

 

 

 

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Minneapolis, MN – September 24, 2009 – The Preeclampsia Foundation announced today that Ms. Kara Boeldt is the 2009 recipient of its annual Hope Award for Volunteer of the Year. This prestigious award will be presented to Ms. Boeldt at its annual benefit gala, Saving Grace – A Night of Hope, on Saturday, October 24, at the Renaissance Chicago Hotel in Chicago, Illinois. The award recognizes an individual who epitomizes the true spirit of volunteerism and has made significant contributions to the Foundation.

Eleni Tsigas, Executive Director of the Preeclampsia Foundation, said, “It’s hard to identify Kara’s most significant contribution as she has been instrumental in so many areas. This past year she served as our National Walk Coordinator, organizing, motivating and supporting the work of two dozen local walk coordinators across the country. This is our largest awareness event of the year.”

Boeldt also has served for several years as a moderator on the Foundation’s highly active online community forum and annually hosts her own local walk in Madison, Wisconsin. Along with another volunteer, she has organized an active local group of survivors and volunteers. She contributes regularly to the Foundation’s newsletter and was featured recently on the Department of Health & Human Services Office of Women’s Health website. She has also worked with her local hospital and medical community to advocate for better patient-provider communication and has contributed to professional education curriculum via Grand Rounds.

Nominations for the Volunteer of the Year award come from the volunteers themselves. A committee comprising former recipients and a member of the Board of Directors reviews the applications and scores them according to published metrics.

Boeldt, formerly of Chicago, Illinois, owns her own business as a licensed Broker Realtor, in Wisconsin, her home for the past four years. She is in the midst of relocating to Midland, Texas, with her husband, Derek and four year old daughter, Avery. Boeldt suffered the sudden onset of severe preeclampsia at 31 weeks gestation in her first pregnancy. Her daughter was born due to fetal indicators, including severe growth restriction. Avery weighed two pounds, seven ounces at birth, spent 27 days in the neonatal intensive care unit, and came home a month before her due date at a weight of three pounds, eight ounces.

When asked to comment on her award, Boeldt says, “I'm humbled. I consider it a privilege to volunteer for the Preeclampsia Foundation. It’s personally rewarding to be an advocate for those who have yet to experience preeclampsia, and a voice for those who are no longer with us.”

 

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Preeclampsia will feature prominently in a new feature film set to go into production in March of 2009. How did this come to be? Is the writer a female preeclampsia survivor? Did the director lose a loved one to the disease?

Neither case is true.

What is true is that the writers were in search of an illness that would occur during pregnancy. Their research led them to learn about preeclampsia and the Preeclampsia Foundation. At the time the writers, Craig Weintraub, Brian Steinbach, and Joey O’Bryan, had never heard of it, which was fine with them since they did not want to incorporate something that was really well known. That was in 2005, around the time of the first Saving Grace gala in Minneapo­lis. Weintraub, the film’s Director, and his partners were still writing the story at the time, so they attended the event to learn more from survivors and medical practitio­ners. Once they learned, as Weintraub puts it, “How could you not want to become more involved to raise awareness and funds for the disease?”

“In our own lives,” Weintraub adds, “there is no experience with preeclampsia; but when you hear the stories [of survivors], you feel like you are part of their family.” Of course his first priority is to complete the film—and to tell a story that is original in all aspects. But in conjunction with that goal, he is interested in doing two things for the Foundation: bringing more awareness to the cause and bringing more money to the effort for research.

The movie is entitled, Baby Grand, and is the story of a man in his late twenties/early thirties with everything in place in his life – a good job, a new house, and a pregnant wife. When he finds out he was adopted as an infant then finds out all the information in his adoption papers is false, things begin taking an unexpected turn. Weintraub won’t divulge what happens or what the exact circumstances are to avoid taking away the element of surprise in the story.

Weintraub believes that with preeclampsia as a major element of the story that the disease will be put on center stage. He hopes the film will have a national and international release. The filmmakers will give a portion of the proceeds from the theatrical release to the Preeclampsia Foun­dation. In addition, there will be a small featurette on the DVD bonus materials to explain more about preeclampsia.

Once the movie is released, there will be private screenings that will act as fundraisers for the Preeclampsia Foundation. In fact, even on paper, the film has already raised money for the Foundation. A walk-on role in the film was auctioned off at Saving Grace in September and brought in $1,000. Weintraub says it is way too early in the process to know exactly how the auction winner, a Preeclampsia Foundation volun­teer, will be used in the production. The film is nearing the pre-production stage which means casting and budgeting are starting. Filming will take place in New Mexico.

Weintraub is a native of Long Island, NY and attended New York University film school. His resume includes second unit directorial work, a stint with Scott Rudin Productions (which produced films such as Little Man Tate and Searching for Bobby Fischer), and an award from the Long Island Film Festival. He set out to write this story four-and-a-half to five years ago and wanted to write a strong story that would attract “A-list” talent. “We don’t have millions of dollars,” Weintraub says, “but we do have control over what we write.”

He says the film has already attracted top talent and will definitely make a theatrical release. “We are aiming high,” he says, “the higher we go, the more recognition preec­lampsia will get. . . [this] is very special to us because of the power of what it can do.”

 

 

Tagged in: film outreach
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Say “matrix” and visions of a kick-boxing, black-clad Keanu Reeves may come to mind. No, this is not a movie review.

Every day, a small army of Harvard Medical School researchers reports to The Life Sci­ences Building in Boston’s Longwood Medi­cal Area. It’s new, ultra high-tech. It towers over its neighboring hospitals and research facilities and, with its clean lines, giant glass panels and sweeping marble stairway, would be a set designer’s dream for another sequel to “The Matrix”. The men and women who spend so much of their lives in this futuristic workplace are pulmonologists, oncologists, nephrologists, neurologists; they are natives of France, Norway, Sweden, Finland, India, China, Japan, Turkey, and the U.S. They study and work under the leadership of Dr. Raghu Kalluri, Chief of the Division of Matrix Biology at Beth Israel Deaconess Medical Center.

Composed of proteins and found through­out the body, the matrix serves as a platform for cells. Kalluri says just ten years ago, scien­tists believed that a cell contained all the in­formation it needed to function. Researchers have since discovered that the extracellular matrix actually tells the cells how to behave. After countless division, cells become liver cells, kidney cells, brain cells.all kinds of cells. Kalluri says the matrix supporting kidney cells, for example, tells those cells to “behave like a kidney”. Transfer them to a matrix in the brain and they’re no longer act­ing like kidney cells, but rather assuming the function of brain cells. Kalluri says as many as 50 different human diseases can be traced to defects in proteins outside the cell, which would explain in part, why the matrix has become a field of study in itself. And matrix biology has served as a powerful attraction for these graduate students and medical professionals from a range of disciplines.

New Jersey native, Scott Potenta, whose research paper had just been accepted the day we spoke, says he’s always been inter­ested in matrix proteins and their effect on cell behavior. He is studying the way blood vessels react in diseases such as cancer. Valerie LeBleu, a native of France and the first Har­vard graduate student to work at the Matrix Biology Lab, is trying to find alternatives to dialysis for treatment of Alport Syndrome, a genetic kidney disease that affects 1 in 5,000 people. LeBleu and Potenta say they appreci­ate the richness of the laboratory, which is obvious in the diversity of the workforce and the wide representation of specialties, all of which foster the sharing of knowledge and experience. Formal discussions at stations in the main laboratory, as well as informal con­versation over coffee in the break room can and do give way to new ideas, and more than a few “aha!” moments. Both of these young researchers and their colleagues made it clear to this reporter, it’s a privilege to work in this cutting-edge environment.

Their days are spent comparing graphs on a split computer screen or peering into micro­scopes deciphering cells on a slide, manipu­lating organic solutions, each with their own requirements for survival: simple refrigera­tion or having to be gingerly lowered into giant cylinders, filled with dry ice.

In the next row of lab stations, is Dr Keizo Kanasaki, a Japanese native and research fel­low in medicine. Kanasaki collaborated with Kalluri on a paper reported in the May 11, 2008 online “Nature”. They theorize that preeclampsia is actually linked to an absence of 2-ME, and that administering that pro­tein to women with the disease would be a viable treatment. Because this is a women’s disease, you might think that Kanasaki is an obstetrician. He is a nephrologist; he studies the kidney. Which brings us back to the common ground for all of these dedicated researchers…the matrix. Discoveries within that mass of protein, the scaffolding for cells throughout the human body, could yield the keys to unlocking the mystery of pre-eclampsia and, hopefully, lead to prevention.

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<p>The Preeclampsia Foundation recently “signed on” to a letter to Congress that was gener­ated by the Ad Hoc Group for Medical Research. You may know that we are members of “Friends of NIH (National Institute of Health)” and it is through that association we are able to make our voice heard in such matters. Make no mistake about it, we are friends of NIH . . . but as most of us know, even the best of friends can have disagreements. However, before I go there, let’s address the areas in which the Preeclampsia Foundation strongly supports the NIH.</p>
<p>These are clearly tough economic times, and it seems there is a “bail out” or “re­covery package” (depending on whom you are talking to) for almost everyone, and we want to make sure that NIH is not left in the cold. Accordingly, we have supported the recommendation that an additional $1.9 billion be allocated for NIH in the current economic packages that are being debated in Congress. Now, before you get apoplectic over the Foundation advocating what some might describe as irresponsible spending increases . . . consider the follow­ing (according to the Ad Hoc Group on Medical Research):</p>
<p>• NIH has been underfunded (i.e., below the rate of inflation) for the last six years, causing the real dollar value of its grants to drop.</p>
<p>• This funding could support an additional 5,000 grants that are awarded through its competitive system (i.e., only the best get funded).</p>
<p>• This one boggled my mind – and I quote from the letter to Congress, According to a study released in June 2008 by Families USA, on average, in fiscal year 2007, every dollar of NIH funding generated more than twice as much in state economic output. This means an overall investment of $22.846 billion from NIH generated a total of $50.537 billion in new state business activity in the form of increased output of goods and services. This same study revealed that in FY 2007 NIH grants and contracts created and supported more than 350,000 jobs that generated wages in excess of $18 billion in the 50 states. The average wage associated with the jobs created was $52,000.</p>
<p>• Lastly, I learned from the “sign-on” letter that, since 2003, NIH has lost about 14% of its purchasing power when measured against inflation in the biomedical arena</p>
<p>So, not only is NIH the epicenter of medi­cal research in the country, it is an economic engine that generates good jobs (with the positive ripple effect that has in local com­munities). It strikes this writer as just plain good sense that we should be supporting this allocation request. It’s an investment.</p>

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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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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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“I have learned through bitter experience this one supreme lesson: to conserve my anger. And as heat conserved is transmitted into energy, even so our anger controlled, can be transmitted into a power that can move the world.” The quote above is from Mohandas Gandhi. I think it captures a very real component of human nature and gives us pause to examine our own behaviors and actions. Tragedy and sadness of any sort can fuel a torrent of emotions—among them anger.

Anger is a reasonable response for a woman who has had preeclampsia and perhaps lost a child or suffered debilitating damage to her body. Anger seems most rational for the husband who finds he is a single parent because of preeclampsia. Anger is almost logical for parents of a premature baby who may face a lifetime of physical and developmental challenges because of preeclampsia.

I get angry too when I realize that ignorance of the symptoms of preeclampsia—simple awareness—might be paid for with a woman’s life or that of her baby. I get really angry when I realize that preeclampsia, when we consider its scope of impact, is one of the most poorly funded areas of research at the National Institutes of Health (NIH).

To be fair, it’s not unreasonable for medical professionals to also well up with anger at the helplessness they sometimes feel when they can assess the problem but have no effective intervention to save mother and/or child. Few things are as frustrating and anxiety producing as the sense of being powerless.

Finally, it’s not at all unreasonable for all of us to seethe over the lack of societal awareness and understanding of preeclampsia. We know that approximately one in 12 pregnancies will result in a diagnosis of preeclampsia and that 25% of those cases will be severe. With 4,300,000 births in the U.S. in 2006—that equates to a diagnosis of severe preeclampsia every 6 minutes of every day of the year. It’s easy to be angry.

The challenge (as we all know) is to not let the anger consume us. For me, this is where Gandhi’s quote becomes useful. If I can use my anger’s energy to address a root cause of that anger—that is anger well channeled.

Over the past few months I’ve had the privilege of getting out from behind my desk to meet many preeclampsia survivors, families, members, supporters, and researchers around North America. To be sure, I cannot presume to know the inner thoughts of all these good people; I don’t know where the anger lies, how deep it may run, or if it’s even there at all. However, I have seen people “well channeling” their energies and I am hazarding a guess that some of it is out of frustration and anger. And my message today is a simple one…that’s OK.

You have every right to be mad—real mad—and as a result, that energy (well channeled) is fueling research as well as public awareness.

That anger has become an empowering, liberating force. None of us know with any certainty if we will be the one to, as Gandhi’s quote suggests, “move the world.” I dare say that Rosa Parks never thought of herself as an American icon—but in her quiet and dignified way—she changed America for the better. She moved the world and I suspect she used a little “anger well channeled.”

Our mission is vitally important and we must use every tool we can to succeed. It’s easy to be angry, but it takes work to harness and “channel” that potential energy. It is that very commitment to hard work and heavy lifting that makes the Preeclampsia Foundation—and all its supporters—a “channeling” force for good.

 

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On November 20-22, 2007, a meeting was held in Vancouver, British Columbia to discuss The Preeclampsia Integrated Estimate of Risk Study (PIERS) which was lead by Dr. Peter von Dadelszen. Besides being the lead investigator for the study, Dr. von Dadelszen is also a member of the Preeclampsia Foundation’s prestigious Medical Advisory Board, President of the North American Society for the Study of Hypertension in Pregnancy (NASSHP), and the President of ERIPED (Equipede Recherché Interdisciplinaire sur la Pre-Eclamspie et ses Determinants), Canada’s preeclampsia research alliance.

The goal of the 41-month PIERS study was to create a rigorous standard care protocol for the diagnosis and intervention of preeclampsia and the purpose of the meeting was to move to the next level of the PIERS study. After prospective gathering of data for seven years, and publishing the findings, the next step was to strategize about what had been learned and figure out how to get hospital administrators to adopt the findings as the standard protocol for care.

Representing the Preeclampsia Foundation in non-scientific roles during the two-day PIERS meeting were Executive Director J. Thomas Viall and Fiona Morrow, Forum Administrator and preeclampsia survivor. Morrow was involved in the PIERS study and presented the human component behind the graphs and charts by sharing her story and answering questions. Viall could tell by the eagerness of the interaction that she really got the audience’s attention and described her speech as “emotive and clear.” He said their entire presentation, “…was very powerful. Many of the scientists and medical professionals had tears in their eyes.” They were “just stricken.” Viall credits von Dadelszen with presenting and keeping the human component “front and center” to keep the researchers focused on the importance of the study. “There are moms losing babies, and husbands losing wives,” said Mr. Viall.

The researchers looked at past practice and records of how 400 women were evaluated for, and diagnosed with preeclampsia, as well as the recommendations that were made for intervention. The researchers compiled a snapshot of how, in these 400 cases, monitoring was done; what diagnostic protocols were used, and what interventions were taken. They matched those data to the outcomes of each of the women and found that five percent of the women had negative outcomes (loss of life, stroke, seizures, organ failure, etc). The next step was to develop a standard protocol for all possible cases of preeclampsia, because one cannot predict the outcomes.

Approximately 300 women participated in this phase of the initiative. When the standard protocol of care, which was very stringent, was used for these women, it produced a significant decrease in negative outcomes; which dropped from five percent to approximately seven-tenths of one percent. Viall pointed out, that unfortunately, there was no shift in neonatal outcomes with the standard care protocol. Viall thought this study might present a major opportunity for the Preeclampsia Foundation, in that the Foundation could seek grants to do similar studies in the U.S., based on the PIERS findings. The goal would be to change diagnostic and intervention protocols in the States, though Viall acknowledged that differences in the Canadian and U.S. health care systems might present certain challenges. At a minimum, he said, “the Preeclampsia Foundation could be a clarion voice for the patient by promoting its view of best practices.” We must continue to be the honest broker with no agenda other than minimizing negative outcomes…that will help to save lives.”

Acknowledging that preeclampsia is an even bigger problem in the developing world, the meeting also focused on the development of condensed recommendations for diagnosis and intervention in less developed countries. ”I had the opportunity to meet and speak to the Coordinator of Maternal and Perinatal Health activities within the Reproductive Health Division of the World Health Organization. He was quite impressed with our work and I do believe we will stay in touch and consider ways in which we can collaborate in the future,” said Viall. While delving into the underdeveloped world is “not necessarily a front line mission-issue for the Preeclampsia Foundation, the Board of Directors has begun to look at ways we might begin developing materials and guidelines to have an impact beyond North America,” said Viall.

 

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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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Posted on in Health Information

Several years ago, Dr. Jun “Jim” Zhang, a senior investigator at the National Institute of Child Health and Human Development approached the Preeclampsia Foundation about working together on an epidemiological research study. Here was the study’s rationale:

“Preeclampsia is a syndrome of hypertension accompanied by proteinuria. It is a major pregnancy complication, associated with premature delivery, fetal growth restriction, abruptio placentae, and fetal death, as well as maternal morbidity and mortality. Although preeclampsia has been recognized for centuries, the etiology of this disorder remains unknown. Familial clustering of preeclampsia has long been identified, leading to the concept of a genetic basis for this syndrome. We propose a familial genetic study of preeclampsia. As such a study is often difficult to do, we plan to conduct a pilot study to test the feasibility, logistics and examine frequency of genetic polymorphism of certain genes in the target population.”

A total of 60 women who had preeclampsia during their first pregnancy were identified through the Preeclampsia Foundation. Women who had chronic hypertension or diabetes prior to the first pregnancy were excluded. We also tried to enroll their family members in the study. All subjects were asked to complete a self-administered questionnaire and collect mouth wash samples, in order to collect the buccal cells from which DNA was extracted. Women who reported having hypertension during pregnancy were also asked to sign a medical record release form, and a copy of their medical record was obtained to confirm the diagnosis of preeclampsia.

Forty-six women returned the questionnaires and samples, resulting in a 77% participation rate – a very high response for research studies. The actual enrollment rates for the biological mother, father, mother-in-law, and father-in-law ranged between 61% and 26%; and the actual enrollment rates for full sisters, brothers-in-law, full brothers and sisters-in-law ranged between 23% and 36%.

“Thus,” concluded the abstract, “conducting a familial genetic epidemiologic study with self-administering questionnaires, mouthwash and buccal swabs is feasible. However, strategies for increasing participation rates among family members are warranted.”

We concluded the collection process in early 2006, and the resulting abstract was submitted to the International Society for Studies on Hypertension in Pregnancy and the Society for Pediatric and Perinatal Epidemiology annual meetings. Our Study Managers, Anne Garrett and Carrie Barrion, presented the poster at the latter meeting.

 

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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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