Posted in Heard on the Hill on June 05, 2012 by Website
On May 24, 2012, the U.S. Senate passed the Food and Drug Safety and Innovation Act, which reauthorizes funding for activities related to the drug and device approval process at the U.S. Food and Drug Administration (FDA). The legislation also includes requirements and provisions for faster review of new and innovative therapies in order to allow patients to be able to access these therapies more quickly. The next step is for the U.S. House of Representatives to pass the bill, and then a final bill will go to the President for signature.
During debate on the Senate bill, Senator Mark Warner (D-VA) spoke on the necessity of finding ways to strengthen and improve the FDA’s review process of new and innovative diagnostic tests, including biomarkers. While biomarkers are not specifically addressed by the legislation, during his remarks, Senator Warner specifically cited preeclampsia as an example of why the country needs to move biomarkers forward and develop a ...
That was my goal with the once-in-a-lifetime opportunity I was given to present one of three President's Program lectures at the American College of Obstetricians & Gynecologists' Annual Clinical Meeting.
"Patient Perspectives on Preeclampsia" - or as I joked, "lessons from this side of the stirrups" - was well-received by the standing-room-only crowd in the main auditorium of the San Diego Convention Center. More importantly, the many comments I received after the lecture satisfied me that I achieved my objective - to reach their hearts with compelling, real-life stories illustrating the impact preeclampsia has on mothers, fathers, and babies; and to reach their minds by inspiring clinical practice behaviors that include educating each and every expectant mother with non-alarmist, but sound information about the ...
Posted in Preeclampsia Information on June 05, 2012 by Website
Professors Chris Redman and Isabel Walker, co-authors of Pre-eclampsia: The Facts (Oxford University Press 1992) and co-founders of Action on Pre-eclampsia (APEC) in the UK, are seeking input from members of the Preeclampsia Foundation for their latest book, The Pre-eclampsia Survival Guide.
The new book, also co-authored by Joyce Cowan, a midwife who is Director of New Zealand APEC (NZAPEC), will be a comprehensive guide to pre-eclampsia for women and midwives. It will cover everything from historical theories to current treatments; from causation to detection; from prevention to management. It will be rooted very firmly in the real experiences of women who have suffered pre-eclampsia - and that's where you come in.
The authors are keen to illustrate their key points with real life case histories gathered from several different parts of the world. You could be part of this process by contributing to
Posted in Volunteer Happenings on June 05, 2012 by Website
By Jill Siegel ~ As Father's Day approaches, I feel honored to be able to give a very personal shout-out in this newsletter to my husband and our daughter's father, Jeff Siegel. There are so many Preeclampsia Foundation fathers, husbands, and partners who are often 'silent partners' in our volunteer efforts. Any one of them - pick a name: Dan Sloan, Tim Purnell, Todd Beadle, Demetri Tsigas, Jason Drews, Kurt Detweiler, Jay Weeks, Tim Aiken... and the list could go on and on - could be profiled here. For one, I have to laugh when I recall Tim Aiken's help at the 2011 Chicago Promise Walk and 5K Run. Due to a misunderstanding with one of our vendors, he and I found ourselves driving in a car along a bike- and pedestrian-only path in order to mark our course!
I am sure all the many 'silent partners,' like Jeff, have schlepped more than a few tables to a Walk, occupied a child or overlooked household chores so their partner could take another volunteer ...
Posted in Preeclampsia Information on April 30, 2012 by Website
Findings from several studies support the hypothesis that stress caused by a traumatic pregnancy and delivery can often override the ability to emotionally cope, leading to psychiatric complications such as post-traumatic stress disorder (PTSD) and post-partum depression (PPD). The combination of suffering a serious illness, combined with an unexpected caesarean section, birth of a premature child, or infant loss, is a heavy burden to bear both physically and psychologically.
Preliminary research findings, including a study initiated by the Preeclampsia Foundation, suggest that women who have endured traumatic pregnancies such as severe preeclampsia, eclampsia and HELLP syndrome have a higher incidence of PTSD and PPD than women without these complications. More research is needed to help move this information to clinical practice, but anecdotally enough of our survivors are impacted, that we offer these recommendations based on general trauma recovery practices.
Posted in Volunteer Happenings on April 05, 2012 by Website
What was your experience with preeclampsia? I developed a life-threatening case of severe preeclampsia in 2002. My daughter was delivered by emergency C-section 2 ½ months early weighing 3 pounds and measuring 14 inches long. In my case, delivery did not relieve my symptoms and I spent time in the ICU with a pulmonary artery catheter in my neck, unable to see or hold my daughter for her first days of life. Even with extremely high blood pressure, incredible headaches and pulmonary edema, my doctors released me on two separate occasions. Each time I had to be re-admitted within hours, with slurred speech, vision problems, and tingling in limbs. In total, I remained in the hospital on magnesium sulfate for about three weeks as the preeclampsia continued postpartum. My daughter came home after 30 days in the NICU.
How aware were you about pre-e before/during your pregnancy? I was not familiar with preeclampsia other than maybe a brief ...
Posted in Heard on the Hill on April 04, 2012 by Website
During the week of March 26, 2012, the Supreme Court of the United States heard arguments about the constitutionality of the Patient Protection and Affordable Care Act (ACA), otherwise known as the Health Reform Law. As the Preeclampsia Foundation continues to advocate before state and federal policymakers on maternal health issues, we are watching closely to understand what affect the Court's decision(s) will have on women and their families.
The following is an overview of the key questions being considered by the Court after three days of debate - the longest hearing on a single case heard by the Supreme Court since 1966.
Should the law even be considered by the Court at this time - the Anti-Injunction Act? The court must determine whether the case can be decided now, or whether the court must wait until 2015, when the tax provisions of the law (individual mandate requiring individuals to purchase health insurance) go into effect. ...
Posted in Research on April 04, 2012 by Website
At the Society for Gynecologic Investigation (SGI) Annual Scientific Meeting in San Diego, Calif., in March, the Preeclampsia Foundation, in collaboration with lead authors Dr. Ineke Postma, Dr. Gerda Zeeman, Dr H. Groen of the University Medical Center Groningen, the Netherlands, and Dr. Thomas Easterling of the University of Washington, presented a poster on cognition, quality of life and social functioning after a hypertensive pregnancy. Many formerly preeclamptic women report difficulties with memory or word choice postpartum, but so do many women with normal pregnancy courses. The unanswered question: what is the likelihood that preeclampsia causes brain changes independent of pregnancy itself? If there are preeclampsia-specific changes, can those be separated from the trauma of a medical crisis?
Enrolling more than 1,000 participants in this study, the Preeclampsia Foundation's survey queried women with (cases) and without (controls) a history of hypertension in ...
The Promise Walk for Preeclampsia means something unique to each participant across the country... but this year for one young preeclampsia survivor, it means getting to see her artwork impact thousands!
Mya Detweiler, age 10, and her mother Dawn are no strangers to the Preeclampsia Foundation, or the Promise Walk. After experiencing severe preeclampsia and a harrowing premature delivery, Dawn turned her passion for the cause into action as a lead volunteer for the Foundation, including coordinating her own local Pennsylvania Promise Walk since the inaugural walks in 2005.
"Since she was little, Mya's been helping me stuff goodie bags and hand out ...
The October 2011 issue of Expectations (featuring patient-centered care month) highlighted two powerful, silver-screen accounts of parents confronted with the unthinkable: a child's health crisis with no known cure leading doctors to tell them "there is nothing more we can do." Those simple words - and the prospect that there was no hope - prompted these every-day parents to take on the most important "projects" of their lives: saving the lives of their children.
These extreme examples of patient advocacy provide a humbling reminder of how important our own voices - and understanding of our conditions - are in our individual health care (during pregnancy and otherwise).
In thinking about patient advocacy in relation to my own pregnancy, I am ashamed I didn't ask more questions when I was ordered to take my first (and then second!) 24-hour urine test. I didn't know that a 24-hour urine test wasn't routine, and my doctor was certainly not offering up any ...
Posted in Volunteer Happenings on March 05, 2012 by Website
What was your experience with preeclampsia?
In my first pregnancy I wasn't worried about PE at all; everything was going smoothly until 31 weeks when, at our last childbirth class on a tour of the hospital's Labor & Delivery (L&D) ward, I started having painful contractions. We ended up calling my OB from the hospital parking lot and she told us to go back up to L&D where they hooked me up and determined - yes - these were real contractions & I was starting to dilate. Many hours of monitoring and couple shots of terbulaline later they sent me home. I ended up at my 37 week appointment, being sent over to L&D for an induction because of preeclampsia.
How aware were you about preeclampsia before/during your pregnancy?
I'd never really heard of preeclampsia before my first pregnancy. During my pregnancy as I started having high BP sometime around 34 weeks it got mentioned and I knew there were some ...
In the words of 17th century English poet John Donne, "No man is an island"... and in the world of fundraising, this is doubly true. The incredible success of the Promise Walks each year is due in no small part to the ability of local walk coordinators and participants to gather their friends and families together and spread the infectious hope for the future that is at the fundamental core of the Promise Walk.
But how does a walk move from helping the Foundation fund a single local education campaign (around $2,000) all the way to funding an entire Vision Research Grant ($25,000)? The answer is the passion and drive of team work! So if you haven't already, start a team and read the following tips on making a big difference:
1) Have a Plan. Set a reasonable goal and make a list of people who would potentially support your efforts. For instance,
Posted in Volunteer Happenings on February 06, 2012 by Website
For Dallas-area volunteer Nicole Purnell, fundraising for the Preeclampsia Foundation is nothing new: she is currently in her fourth year as the Dallas-Ft. Worth Promise Walk Coordinator. So when she and her family decided to do another fundraiser for the Foundation, they decided to try something entirely different, and catered to their home state of Texas: a clay-shooting tournament to be held March 10.
"Of course, I realize that shooting clays is not an activity for everyone's taste, but this IS Texas after all!" explained Purnell. In organizing the event, she and her stepfather, who is co-hosting the tournament, realized that this would be a unique opportunity to pull in a different crowd than that of the Promise Walks for fundraising and awareness.
"My stepdad is a retired Navy SEAL and has many friends who enjoy clay shooting," Purnell said. "I had been wanting to do a clay shoot event for some time, and then, one day I got my daily Groupon ...
Posted in Volunteer Happenings on February 04, 2012 by Website
Perinatal Outreach Educator Networks (POENs) are generally funded by individual states to provide perinatal (the care offered to a mother and child just before and just after birth) medical education to health care providers in the region, enhancing the quality of care for mothers and infants and reducing morbidity and mortality. Specialists share their experience and knowledge with other physicians and community hospitals across regions by offering or facilitating programs such as physician and nurse consultation services, continuing education for health care professionals, emergency medical transport for referring hospitals within the region, consultation and technical assistance on emerging perinatal issues, and sometimes even lending libraries.
For example, in Illinois, there are 10 perinatal centers designated by the state. Rush Hospital in Chicago is home to the the largest network, involving 18 hospitals delivering more than 30,000 infants. The Rush Perinatal ...
Our seventh annual Saving Grace dinner gala fundraiser took place in Manhattan on the evening of Saturday, November 12. It was simply a wonderful evening, replete with raw emotion, inspirational stories, hope and gratitude. Together with The Foundation for America's Blood Centers, another worthy charity dedicated to saving the lives of mothers and babies, we reached a broad and extremely engaged audience of almost 500 guests. With the support of so many individuals and our event sponsors - Johnson & Johnson, Ortho Clinical Diagnostics, Merck, Abbott and many others - we grossed nearly $550,000 to support the vital missions of our organizations!
Our theme this ...
Some of the most important participants at the Promise Walks for Preeclampsia are healthcare providers who come out to support the Foundation. Many are community physicians and nurses who treat preeclampsia on a regular basis. The Promise Walk is an annual event held in numerous cities that allows the preeclampsia community to come together and mourn their losses, celebrate their hopes, and work together toward the common goal of raising money to fund research and create awareness.
Many Promise Walks invite healthcare providers to speak about their own professional experience with preeclampsia. That provider brings their own professional validation to the need for awareness and research, while giving attendees hope, knowing that there are medical professionals working diligently to solve the "preeclampsia puzzle."
So what causes these health care providers to be so passionate for the preeclampsia cause and to join our efforts at the Promise Walks? To provide ...
Posted in Volunteer Happenings on October 31, 2011 by Website
Becky Sloan, National Promise Walk Director
What was your experience with preeclampsia?
I began experiencing face and body swelling and headaches at 22 weeks. These symptoms, along with extreme weight gain, bouts of high blood pressure, and lower fetal movement continued until 31 weeks. My doctor was never concerned with my symptoms and told me, "If you don't stop gaining weight, you'll gain 70 lbs. before your pregnancy is over." I didn't make it out of the office before I burst into tears. I felt awful, like no one cared how I felt, and I still had no idea what preeclampsia was because the signs and symptoms were never mentioned to me. I was never diagnosed with anything more than ...
Posted in Preeclampsia Information on October 05, 2011 by Website
As a woman, you may feel that you are expected to do it all: career, family, community responsibilities. A high-risk pregnancy can make those responsibilities seem especially magnified as you try to square everything away before taking maternity leave or while on bed rest. For women facing a high-risk pregnancy (whether because of a previous preeclampsia experience or for other concerns) and caught up in the "Super Woman" mentality, you can lose sight of your own needs, goals, and most of all health. It can be challenging to make time to take care of you, a fact to which many preeclampsia survivors who missed the warning signs will attest. The day can slip away without taking a break to assess your physical and mental well-being. Nevertheless, for a patient who may face potential pregnancy complications, focusing on your care should be paramount!
Posted in Heard on the Hill on October 05, 2011 by Website
The Foundation is closely tracking and providing perspective to Congressional efforts related to maternal and neonatal health and well-being, especially as they may impact preeclampsia awareness and related care. Two pieces of legislation of interest are the PREEMIE (Prematurity Research Expansion and Education) Reauthorization Act and the Birth Defects Prevention, Risk Reduction and Awareness Act.
The PREEMIE Reauthorization Act, sponsored by Reps. Leonard Lance (R-NJ), Anna G. Eshoo (D-CA) and Senators Lamar Alexander (R-TN) and Michael Bennet (D-CO), would expand research, education and intervention activities as they relate to preterm birth. The legislation will also work to promote the use of evidence-based standards of care for pregnant women. The original PREEMIE Act was signed into law in December 2006, and the programs supported through the law at the Centers for Disease Control and Prevention and other federal agencies and subsequent resources provided to ...
Posted in Media on October 05, 2011 by Website
I have always been a fan of the movies; I enjoy escaping into a dark theater to watch a story unfold before me on the big screen. In fact, I am sitting down to write this after enjoying a trip to the movies with my family to see Dolphin Tale, a terrific story that had my six-year-old daughter both enthralled and teary-eyed when she saw the hurt dolphin who we would come to know as Winter. I hope some of the passion and determination exhibited by Sawyer Nelson (played by Nathan Gamble) sunk in with her and she will someday find her own calling (other than Barbies!) that inspires her in a similarly compassionate and blindly hopeful way.
True stories can be more mind-blowing to an audience and more captivating to Hollywood filmmakers than fiction. These films - and their stories - in turn, can motivate others to act in inspired ways. In particular, big screen messages of medical empowerment can have an impact on audiences. The real life inspiration for the film Lorenzo's ...