Recent blog posts

<p>It's hard not to get excited when you read that headline. And then you remember that it's April 1st and you're probably having your leg pulled. Before you consider yourself an "April Fool," consider these other headlines, pulled directly from media sources around the world over the last month or two:</p>
<p>"Faulty gene that causes pre-eclampsia discovered."</p>
<p>"Gene study lifts hopes on pregnancy."</p>
<p>"New gene linked to preeclampsia discovered."</p>
<p>"First genes linked to pre-eclampsia and immune system disorders."</p>
<p>Reasons to get excited?  Safe to trust the news source?</p>
<p>Many investigators are using genomics - the study of our genes - to discover areas of our genome responsible for specific pregnancy functions that seem to go awry in preeclamptic women.  The problem with headlines that suggest "the" gene has been found is that experts mostly agree that preeclampsia is a multifactoral disease, meaning that preeclampsia may have multiple causes with several different genes responsible for a variety of malfunctions. No single gene causes preeclampsia; more likely it is the confluence of many aberrant genes. Read our article about the cause of preeclampsia for a better description and let us know what you think.</p>
<p>In other news, not all media headlines are misleading or hyperbolic.  The Wall Street Journal recently (and accurately) reported the impact of pregnancy on a woman's future health risks in "Problems in pregnancy signal future health risks." This was an important endorsement of our years of work to educate the public and influence the provision of preventive health care for preeclampsia survivors. If you or somebody you know is a preeclampsia survivor, print out these guidelines and take them to your health care provider. Make sure s/he is noting your pregnancy history in your health records. It matters.</p>
<p> </p>
<p> </p>

Hits: (93)

In June, Americans celebrate Father's Day, a holiday that can be bittersweet for preeclampsia patients and their families, many of whom have experienced recent and past losses or endured harrowing scares. The Foundation often describes survivors of preeclampsia as members of "the Silent Club," for the way that such a devastating pregnancy experience can be both silent and isolating. Nevertheless, there is a group whose voice we hear far less when discussing our pregnancy experiences: our husbands, significant others and the fathers and grandfathers of our children.

These men often become the "silent-er" club, watching helplessly and recovering quietly as the blessed event they expected their wives' pregnancies to be turns out quite different. But many of them go on to stand next to us when we throw ourselves into volunteering for the cause, contributing their own expertise and perspective, and even stepping up to become leaders themselves as several members of our Board of Directors have done.

So this month's Expectations celebrates the impact all those dads and granddads have had on the Preeclampsia Foundation over the past decade: whether they are volunteering, sharing their story or wondering how to find information. So to all the dads out there who have given countless hours to the work of this Foundation, we give a resounding thanks for the impact you have had and dedicate this issue to all of you!

We also have exciting news about this year's Saving Grace in NYC and recognize the success of our Preeclampsia Awareness Month efforts, neither of which would have been possible without the volunteer support of women and men.

On a closing note, I just returned from a week in San Antonio where I spent time talking with hundreds of midwives at the American College of Nurse-Midwives' annual conference. It was extremely gratifying to be thanked sincerely and often for the programs and services we provide. Our educational materials were eagerly snatched up; most midwives share our passion for patient education and have the training and temperment to do it well. This patient education program is one of our most successful iniatives - we've already distributed over 50,000 educational materials in the first half of 2011!

Do you have a inspiring or heartfelt "dad" story to share? Please leave a comment.

 
Hits: (91)

I often call myself the "poster child" for the power of education. When you juxtapose my first pregnancy, managed by a very nice, somewhat elderly doctor who euphemistically patted me on the head and made me feel like everything was always all right, against my second pregnancy, managed by an equally nice, albeit younger and more knowledgeable doctor, there are some startling differences beyond age and experience that have everything to do with patient-provider communication (yes, they were both men so ditch the gender stereotypes).

Both pregnancies resulted in severe pre-term preeclampsia. In the first, my baby died. In the second, my baby lived, albeit with a two-week stay at Hotel NICU. There are obviously lots of nuances to each of my pregnancies, but as I look back, I can say with certainty that one of the critical factors for a successful pregnancy is the patient/provider partnership. This sentiment is echoed in a series of "Committee Opinions" produced by the American College of Obstetricians and Gynecologists (ACOG).

What does a "patient-provider" relationship look like?

Here are 10 Things You Can Do to Be a Partner with Your Health Care Provider.

1. Trust yourself. Do not be concerned that you might appear weak, ignorant or overly sensitive for reporting symptoms you are concerned about. Expect diligence and sensitivity on the part of the provider responding to those concerns.
2. Tell the truth. Full disclosure with no "little white lies" about your physical activity, diet, drugs, medications, stress, mental illness, reproductive history, and compliance with the treatment plan are all very important. Your provider will not judge you.
3. Describe any pains or symptoms as specifically as possible. Is it stabbing or burning? Sudden or constant? Tingling or hot? Intensity, exact location, if anything provoked it and how long it lasted are all helpful indicators.
4. State up front all your concerns and desires, best accomplished by writing down your questions ahead of time. Don't leave with unspoken concerns. Do leave with notes or printed materials reinforcing what you've learned.
5. List all the medications you're taking, even vitamins and herbal supplements. Bring supplements to your appointment to help identify ingredients since those products aren't standardized. Medication errors are the largest source of preventable adverse events.
6. Be upfront about anything you disagree with or don't understand. Be sure to understand what options lie ahead if you are diagnosed with preeclampsia. Don't be scared to be honest instead of nodding your head, and then ignoring the plan.
7. Seek test results immediately if they are not provided when promised.
8. Understand the "basics" about your pregnancy body. What's your "normal" blood pressure? And why do you pee in a cup at every prenatal appointment? Which symptoms should you report immediately and what can wait for the next visit?
9. Don't be afraid to use After Hours resources for any concerns. Have phone numbers and locations handy.
10. Comply with the treatment plan. If you've followed all the advice above, you should have a plan that makes sense to you and one you're able to execute.

Do you have additional advice for engaging in an effective patient-provider partnership? Please leave a comment about what has worked for you.

To this day, I look back with great fondness on my second and third pregnancies, despite the scary repeat of preeclampsia, because of the healthy, open, trusting partnership I had with my phenomenal doctor and his like-minded staff.

 
Hits: (362)

By Executive Director Eleni Tsigas

How do you thoughtfully make a decision about medical matters? Especially when there is no clearly prescribed course of action supported by strong research, professional organizations, and universally accepted guidelines? For the majority of us who don't have medical degrees, it's easy to get overwhelmed by the amount of information we are expected to know as a consumer of health care. So, how can you discuss or evaluate potential preeclampsia interventions with your doctor?

Use the BRA formula:
B for Benefit:
What's the potential benefit of trying to prevent preeclampsia with low dose aspirin/Lovenox/Atenolol/vitamin D or other interventions -- all with varying degrees of evidence? Could this intervention prevent preeclampsia, delay its onset, or lower your chances of getting it? And when you consider those benefits, make sure you understand the difference between having a 50 percent reduction and a reduction from 2 percent to 1 percent - they are identical! How scientific evidence is translated for you will impact how you perceive the benefit.

R for Risk: Everything comes with some risk, so it's important to press for a truthful and complete answer -- not only what side effects might happen if you choose a certain regimen, but the chances of that possibility. This, of course, is why prescription drugs come with really thin papers that fold out to the size of a US map, microscopically detailing all the potential side effects! This also applies to alternative therapies. Just because something is "natural" doesn't mean there is no risk. Explore the risks to you and your unborn baby. And while we're on the subject of risk, here's an article explaining how math can help you understand what "risk" really means.

You and your physician need to explore not only what the risks for a particular regimen are, but what attitudes, beliefs and values that you bring to this pregnancy. If pregnancy has made you reevaluate your willingness to take risks (as it does for many of us!) then which risks allow you to honor your values? You might be either more, or less, willing to run risks and only accurate information will let you assess how your medical care fits with your values.

A for Alternative: There is always something else you could do. It may be another therapeutic intervention or simply doing nothing. A good health care provider will appreciate that you have brought thoughtful questions to the exam room, but remember that your "internet research" may not make you an authority on the subject. Establish a close partnership with your provider that will allow you to weigh all of the options before making critical decisions about your health care.

For you as the patient there is a lot of information for you to absorb, especially with a high risk pregnancy, so keep in simple: just use your BRA formula when considering a course of a action: what are the Benefits, the Risks and the Alternatives?

Make sure you understand the answers, feel free to talk to others who have probably faced very similar situations on our Community Forum, and then feel confident you have been thoughtful and thorough in your medical decision.

 

Hits: (380)

I am an expert on me stickerThe term “empowered patient” has become overused and often exhausting to embrace. If that sounds completely contrary to what we’ve been espousing at the Preeclampsia Foundation, it’s because over time and in an increasingly complex health care system, for most of us, what is expected of us as “empowered patients” has become too big to manage. So try to keep it simple and doable.

5 Steps to Being “Empowered”
The cornerstones of being an empowered patient, particularly when faced with a complicated pregnancy, include:

1. Knowledge. Access to understandable and accurate health information is essential to empower a woman to participate in her care, and patient-centered organizations take responsibility for providing access to that information.
2. Participation. This means taking steps like getting your lab results, and engaging your provider in questions and answers.
3. Find another provider if #2 above isn’t working. We’d like to see all providers wearing stickers that say “I’m listening.” If yours isn’t, look elsewhere.
4. Listening to your body, and sharing that insight with a receptive provider. Patients are partners and have knowledge and expertise that is essential to their care.
5. Have your own advocate, especially when things really start to fall apart and you are not mentally or sometimes physically “present” and alert. This may be a husband, partner, mother, sister or best friend.

This month, we’re focusing on #4 which is also one of the hallmarks of patient-centered care.

There’s a reason we’ve stuck by one of our core messages – Know the Symptoms, Trust Yourself – for so long. While we are not so naïve as to think all preeclampsia tragedies will be staved off by getting an earlier diagnosis, we do know from story after story, that women often know that something is going wrong before her health care providers do. We sometimes joke about having a “sixth sense”, but “I just knew something was wrong” is a very common refrain, and it may not accompany the classic symptoms about which we provide patient education.

One of our members, Laura Daigle Muller, Anchorage, Alaska, saw her first pregnancy deteriorate over the course of a month. Her blood pressure began creeping up though was still within “normal” range, she had swelling, and a strong intuition that something was wrong. When she reported the symptoms to her midwife, she was brushed off, but Laura heeded that not-to-be-ignored inner voice and took herself to her hospital’s labor and delivery unit to be checked over. Turns out, she had severe preeclampsia, was immediately admitted and delivered shortly later. She credits her insistent intuition with saving her and her baby’s life.

“Mother intuition is a funny thing, but I'm glad God gave it to us,” writes “phoenix-mama” in our Community Forum. “Monday I started feeling off... and had this nagging intuition that wouldn't set still.” Even after calling her midwife and checking her blood pressure on a home machine, she “couldn't shake the niggling feeling I had, so I decided to go in.”

It turns out her proteinuria was in the severe preeclampsia range and she was immediately admitted to the hospital. Had she not heeded her intuition it would have been several weeks before she was scheduled to see her care provider and a lot could have gone wrong in that time.

"Mellybute", another Forum poster, described her “feeling” this way: “It's hard to pin point exactly when, but for sure in my second trimester I knew there was something going on with me. I did not know what [preeclampsia] was then or the signs and symptoms or I would have known exactly what was going on with me.”

Sometimes that inner voice may be a lifesaver. “Being in tune with my body (knowing I felt off) really saved my life. Honestly, I baffled the medical staff...the fact I felt it coming on before/while it really turned severe,” writes “kellikbock” on our Forum.

Unfortunately, we’ve become so “smart” about medicine and drilled on the value of evidence-based choices, that we’ve forgotten that we are very qualified experts on ourselves. The two halves must work together -- your care providers bringing well-grounded medical experience with and deep respect for preeclampsia; and you, the pregnant mother, bringing 20-30-40+ years of experience, deep respect, and understanding of your body.

We have intellectualized the intuition right out of ourselves. When that quiet voice deep inside says “something’s not right”, don’t ignore it. Please. Wear a sticker proudly that says “I Am an Expert About Me” and call liberally upon your tangible and visceral evidence to contribute the information your health care providers need to support your pregnancy.

Do you have a “sixth sense” story about your pregnancy? Please post it here or on our Facebook page.

 

Hits: (117)

 

What an amazing whirlwind of a weekend we had in New York City! You'll hear more from our Saving Grace co-chair Patrick Dignan in next month's newsletter, but for now let me just say "Wow! New York really rolled out the red carpet for the Preeclampsia Foundation." Here are a few headlines from the events of Saturday, November 12.

During the day we were honored to co-host a post-graduate course at Weill Cornell Medical College with experts from Yale, Harvard, NYU, University of Washington, Columbia and Cornell, along with always stimulating Dr. Baha Sibai, plus yours truly delivering a session on patient-provider communications. Over 70 attendees comprising physicians, nurses, midwives, residents, other researchers and a few preeclampsia survivors learned, debated and discussed some of the latest information about hypertension in pregnancy. Huge thanks to our friends at Cornell, all the presenters, as well as March of Dimes who provided underwriting support. It was especially compelling as I, and other Foundation volunteers and staff, met recent preeclampsia survivors struggling with losses and seemingly hopeless situations. These encounters always serve to rededicate us to our mission, but I hope in some small measure we were able to help them through their suffering.

During our annual benefit gala, we announced the launch of a grassroots initiative -- a petition drive to secure over 2,500 electronic signatures before the end of the year, asking for May to be declared "National Preeclampsia Awareness Month." Smart phones were whipped out and the drive was on! As I write this, we already have 780 signatures. We need your help to secure the remaining 1,720 signatures in the next six weeks. Please sign on and forward this petition to everybody you know. As I said Saturday night, this is one of the few messages that needs to be sent to Congress and the President that doesn't cost tax payers a cent. Let's ensure the nation hears us now!

The evening was not without tears as the emotional depth of the cause was brought to life via sight, sound, stories and music, but there was also laughter as a new text-giving campaign was introduced that allowed donations and text messages to be projected on the screen. A few creative attendees used the public broadcast of their message to bring hilarity and good-natured ribbing to the evening.

If I start thanking everybody who deserves our abundant thanks, we'll be even later than we already are getting Expectations out this month. Look for photos from the gala and a longer article next month.

 

 

Hits: (88)

<p>You can't trip through February without noticing that heart health organizations everywhere are using the month to raise awareness about women's heart disease. For preeclampsia survivors, this message comes with an important footnote - your pregnancy history matters to your long term health and especially your risk for heart disease. Last year, the American Heart Association updated their <a href="http://preeclampsia.org/the-news/3-newsflash/198-foundation-endorses-new-american-heart-association-heart-disease-prevention-guidelines" target="_blank">guidelines</a> to draw attention to the fact that women with a history of preeclampsia are at higher risk for heart disease, some studies have equated our risk to that of a smoker. You can read more about this research on our <a href="https://www.preeclampsia.org/forum/viewtopic.php?f=28&amp;t=44221&amp;p=345827&amp;hilit=cardiovascular+disease#p345827" target="_blank">Community Forum</a>. <br /><br />While some of us may shake our fists at the "Evil Preeclampsia Monster," let's instead turn this news into a concrete warning sign to take charge of our heart health, aggressively get our diet, exercise and other lifestyle modifications under control, and be sure that our health care providers are partnering with us to stay on top of our heart health. As women, we get few early indicators of heart disease. A history of preeclampsia is a not a death warrant - it is a call to action. Consider the resources that <a href="http://www.womenheart.org" target="_blank">Women Heart</a> make available to us and take charge of your health today. For instance, their recent <a href="http://www.visualwebcaster.com/event.asp?id=84704" target="_blank">webcast</a> with Secretary of Health Kathleen Sebelius and other VIPs mentions this important preeclampsia-heart health linkage.</p>
<p>I was in meetings all day Friday - a day we were called to wear red - and spent much of the time strategizing about the Foundation's role in this important preeclampsia-heart disease linkage.  Saturday morning, our meetings continued, but not before I joined my family at a local 5K run/walk and committed myself to not just talking about it, but doing something about it.  It's not just about wearing a red dress for a day, it's about walking 30 minutes a day, and saying "no" to supersizing your french fries!<br /><br />What kind of commitment can you make to being healthy for yourself and the precious baby(ies) you brought into this world, sometimes with great sacrifice? <a href="https://www.facebook.com/pages/Preeclampsia-Foundation-Official-Site/79881357937" target="_blank"> Share any tips you have</a> and we'll collect and publish them in a future edition of <em>Expectations</em>!</p>

Hits: (113)

May and Mother's Day are so intertwined that it's hard to think about one without the other, especially here at the Preeclampsia Foundation, where we've built a nationwide campaign at www.promisewalk.org/campaign to get the word out about preeclampsia - the "thing" that for many survivors turned our entrance into motherhood into a nightmare.


I believe celebrating mothers is a commemoration of extremes. Not just because preeclampsia is an extreme condition, but because the mothers I am privileged to know represent the extremes that make up all mothers: soft and tough, nurturing and driven, catalytic and comforting, impatient and optimistic.


Next Monday, I'll be representing you to 5,000 Ob/Gyns at their Annual Clinical Meeting in San Diego. You've heard us espouse the importance of the patient-provider relationship; now we need "the docs" to embrace their half of the partnership. Who better than an "extreme" mother to tell 'em so?

And, starting next weekend, that same message about the power of knowledge - along with a clarion cry for more research to solve this puzzling problem - will be spread across this country, via The Promise Walk for Preeclampsia. Which Promise Walk are you supporting? We use the walks to force ourselves into the consciousness of our communities and to say "Do not take for granted this thing we call birth." It is can be the most beautiful thing and the most tragic thing to happen to us. Help us end the tragedy.

"Before you were conceived, I wanted you. Before you were born, I loved you. Before you were here an hour, I would die for you. This is the miracle of Mother's Love." ~ Maureen Hawkins


"Well behaved women seldom make history" ~ Laurel Ulrich

Two quotes representing who we are at the extremes. The first one, obvious. The second one, despite its Mae West undertones, I like to think of as the reason "bold" and "influential" are two of our organization's core values. We're here to be effective and sometimes that means making some noise, ruffling some feathers. I guess that brings me back to my lecture to 5,000 physicians. I hope they're ready!

There are lots of ways you can be a mother at the extremes this month.

  • Join us for one of our Twitter Chats with the March of Dimes (Thursday, May 17 at 1 PM) and with HealthyWomen.org (Thursday, May 24 at 12 noon).
  • Click to make your Facebook profile picture our Preeclampsia Awareness Month image throughout the month of May.
  • Share your story in your local community, using any of the resources available on the Awareness Month Campaign page.

We're honored to have you in our tribe. Happy Mother's Day!

 
Hits: (173)

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 signs and symptoms of preeclampsia, as well as addressing the psychological and long-term physical impact of the disease. (Presentation available for purchase)

If you have ever shared your experience with us, know that you, and the stories of 10,000+ other women, were with me in spirit on May 7. The ACM News wrote about my presentation and the other two preeclampsia lectures (delivered engagingly by renown preeclampsia researcher Dr. James Roberts and clinician Dr. John Barton).

The awareness and education theme was echoed in a Foundation news announcement at the San Diego Promise Walk. With co-authors Dr. Doug Woelkers and Ms. Jennifer Carney, we announced our official list of the Top 10 Pregnancy Guidebooks. This report was created using five criteria designed to ascertain how well the books treated the topic of preeclampsia in a way that would be useful to the one in 12 pregnant women whose pregnancies become complicated by it. Several of the top guidebook authors have already contacted us, thankful that their diligence has been recognized, even while women's real-life feedback has reinforced our findings that the bestsellers aren't always the best books.

And although I'm no Twitter expert, it was fun to join College staff and two Ob/Gyn physicians on a Twitter Chat on preeclampsia that resulted in tens of thousands impressions, and to shoot a quick interview that was aired onsite for the 5,000+ people in attendance.

By all accounts, the entire experience left us all exhausted, but exhilarated. We frequently tout the importance of a patient-provider relationship and it was abundantly evident that the country's leading Ob/Gyn organization shares this goal. We are very grateful.

 

Hits: (192)

Patient-centric care, a buzzword in healthcare reform, should be the obvious goal for any health care system. "What a concept," I utter with a hint of sarcasm. Put the patient at the center of the decisions, resources and desired outcomes?!

However, patient-centric care is also dependent on a related concept: the "empowered patient," a subject CNN medical correspondent and fellow preeclampsia survivor Elizabeth Cohen writes about in her column and book, The Empowered Patient, available in our Marketplace.

An empowered patient is one who has the information she needs to act proactively upon her preeclampsia symptoms. She also has an effective relationship with her care provider(s) so she can communicate her concerns, ask questions, comply knowingly with agreed upon treatments, and make educated decisions. And if she doesn't have the appropriate relationship with her providers, she is confident about asking for what she needs or seeking help elsewhere.

Sometimes it takes a third party to help her get what she needs. A trusted partner, family member or friend sometimes fills that void. Often, our Community Forum becomes that life-saving voice that pushes her to seek immediate medical attention and acknowledge that inner voice that says something just isn't right.

A great example is this case, when Jonathan Barker became a worried husband, got involved in his wife's care and later said, "One piece of advice that the moderators on the Foundation's Forum always shared is that preeclampsia can strike at any time and can get very ugly, very quickly. It is a piece of advice that made the difference." And if you want a laugh about this empowered dad stepping in, read about his experience shopping for nursing bras. That's one lucky wife!

A recent mom had extreme birth anxiety, which is not uncommon for preeclampsia survivors. She advocated for herself and was able to get a sedative during delivery, improving her birth experience considerably.

A mom who had lupus, putting her at much higher risk for preeclampsia, wasn't receiving the kind of care or information she should have. She changed providers thanks to the encouragement of her online support system. Later, despite having preeclampsia, she wrote, "Thank you guys so much! I couldn't have gotten to this finish line without you! I was so knowledgeable and cautious. Got that from this website!"

These stories and many more confirm the importance of sound information and strong support guiding your role as an empowered patient, one of the hallmarks of patient-centric care.

I want to thank Heather Curtis and all our Forum moderators for the smart and empathetic support they provide every day. It's not an understatement when we say they have literally saved lives!

 

Hits: (165)

I was thrilled to be able to announce to resounding applause, "It's official! The US Department of Health and Human Services has declared May National Preeclampsia Awareness Month!" at our annual benefit dinner, Saving Grace - A Night of Hope, on Friday, Oct. 26, in Point Clear, Alabama. The intimate evening was hosted by Leslie Weeks, former board member of the Preeclampsia Foundation and Owen Bailey, hospital administrator for University of South Alabama's Children's & Women's Hospital.

Board members and long-time volunteers of the Preeclampsia Foundation flew in from around the country to take part in this annual benefit dinner, this year held in a beautiful and tranquil setting, the Sonny Hill Polo Complex. A buffet style dinner was held in the beautifully appointed pavilion, followed by a program under a delicately lit tent that overlooked the water. Dr. Gabriella Pridjian, Chair of the Department of Obstetrics and Gynecology at Tulane University's School of Medicine since 2004, provided the keynote address. Pridjian took us through her department's harrowing days during and following Hurricane Katrina in 2005, likening the unpredictability, devastation and lasting impact of that force of nature to the very similar traits of preeclampsia that wreaked havoc on many of our preeclampsia families featured during evening.

(Ironically, Hurricane Sandy wreaked similar disruption in New York just two days later as NICU nurses created makeshift evacuation plans for their tiny patients. Our thoughts are with all the eastern seaboard expectant and new families and their health care providers, even as Sandy winds down and clean up begins.)

Those stories of families deeply impacted by preeclampsia were introduced by Suzanne Stearns and her 11-year old daughter Hannah - who had the unique opportunity to thank both the hospital and the Preeclampsia Foundation for being instrumental in their recovery from early onset preeclampsia. Hannah spent 102 days in Children's & Women's Hospital NICU and Suzanne credits the Foundation with providing the information and emotional support she needed to get through the worse trial of her life.

Our auctioneer for the evening had us in stitches as he provoked some good-natured bidding wars for items ranging from trip packages (Fashion Week in New York had two Alabamians vying to get to the Big Apple!) to a Taylor-Swift-signed guitar (I considered strumming it, but was afraid that would have killed the festivity!), and a gorgeous wall relief, commissioned for the event from artist Ellen Pavlakos. I enjoyed watching my own husband volley with hospital staff for the privilege of owning the first cast of "Embracing Hope." While I agree that a NICU would have been the ideal spot to showcase the hopeful image of mother and baby, I am honored to bring it back to our headquarters, inspiring our mission each day with its profound message.

Other highlights of the evening included: Foundation Board Chair Erik Henrikson recognizing our 2012 Volunteer of the Year Nicole Purnell and our Medical Advisory Board Director Dr. Tom Easterling awarding our two research Vision Grants to Drs. Mark Santillan (University of Iowa) and Stella Goulopoulou (Medical College of Georgia). Easterling described the vital role our Vision Grant funding has had on recent advancements in preeclampsia research, including some current research proposals at the NIH. A remarkable testimony to the catalytic effect that the Foundation is having on research because of your support. If you didn't have a chance to support the Foundation and the hospital's NICU at Saving Grace, please consider making an event donation today.

A special thanks goes to our Foundation Friend sponsor Perkin Elmer, our Foundation Advocate sponsors Alere and Blue Cross Blue Shield of Alabama, and all our other supporters -- The Center for Reproductive Medicine, Sybil H. Smith Charitable Trust, Pronota, Roche and AirTran - for believing in the power of a committed organization to exact meaningful change on a 2000-year old disease.

 

Hits: (81)

You can't open your email or your mailbox without receiving a solicitation from another worthy charity. A recent email I received warned of giving to certain charities that spent too much on their administrative costs or paid their CEOs exorbitant salaries, but unfortunately did nothing to help me objectively evaluate a charity's actual status, mission and financial records. It's easy to become a cynical philanthropist when unvetted alarmist messages hit your inbox. The recent Powerball Lottery got me daydreaming about winning and becoming a big ticket philanthropist. Being the steward of half a billion dollars is a huge responsibility. Of course, being the steward of even a much smaller amount is also a responsibility. How can we sit down with a checkbook and a stack of requests and feel good about our end-of-the-year charitable gifts?


Teaching people to fish or giving them a fish?

In my daydream, my family and I set up the "Hand-Up Foundation" - comprised of board members experienced in helping people get the tools they need to improve their lot in life, rather than just giving them a 'quick fix.' As you evaluate a charity's mission, consider if its programs and services are intended to empower and enable to do the most long-term good?


Applying this principle to medical care, it means focusing on finding a cure instead of just helping individual patients. It means encouraging and teaching people how to live healthier lives, empowering pregnant women (in our case) with the right information to advocate for themselves and their babies, and finding and fixing flaws in the healthcare system that lead to needless disasters.


In short, do you understand and believe in the charity's mission and how they are fulfilling that mission? If you don't know ours, ask me!

Evaluate a charity's core values.
Invest in organizations whose values run parallel to your own values, not just because they are popular, address an immediate public need, or because part of their mission is admirable, but some of it runs contrary to your values. At the Preeclampsia Foundation, we spent a good deal of time a few years ago, reflecting on what our values are, or what we wanted them to be, and found five words that best characterize our core values. We are: Bold, Influential, Empathetic, a Credible-authority, and Catalytic. We try in all respects to uphold those core values in all that we do.


Do your homework with valid sources.
BBB Wise Giving Alliance (www.give.org) and Guidestar (www.guidestar.org) are charity watchdog organizations, third parties whose function is to objectively evaluate non-profit organizations against gold standards in ethical governance, responsible fundraising, and transparency of financial operations, such as salaries of their chief executives and percentage of funds raised that actually go to their programs. It costs money to operate an efficient and effective charity, but most non-profit experts agree that 75% of an organization's income should be spent on their programs and services, versus management and fundraising activities. The Preeclampsia Foundation spends 79% of your gifts directly on mission programs and services.


There are more than one million registered non-profit organizations in the United States. Animals, veterans, health care, education, disaster relief, and the environment are but a few of the categories where there is worthy need. Choose an area of interest to you and then ask of their mission: are they doing good work that will have long-term impact? Are they operating efficiently? Are they having an impact? Would my donation fill an immediate need or provide a long-term solution? Which is more meaningful to me?

Please consider these same questions as you think about a gift to the Preeclampsia Foundation during this all-important season of giving. Money raised now largely determines how far we will go in our mission next year.

I wish for you, your family and friends to have a blessed, peaceful and joyous season, regardless of your faith traditions ... and that we may stand resolved in our healthful wishes for mothers and babies worldwide.

Warmest regards,

Eleni Tsigas

 
Hits: (49)

Five weeks ago, the Preeclampsia Foundation led a historic gathering of nine companies, as well as some of the leading clinicians and researchers in the field of preeclampsia. We also had leaders and front line obstetricians from outside the "inner circle" to ensure we weren't doing too much naval gazing.

This Biomarker Consortium was evidence of several of our core values: we wanted to be influential, catalytic and bold. As the patient advocacy organization caring passionately about improving pregnancy outcomes, we were uniquely positioned to invite and get positive responses from every company who has or is investing in biomarkers as a more advanced technology to diagnose preeclampsia or screen pregnant women for future disease.

I was energized by the ideas and commitment in the room, by the spirit of collaboration and the recognition that together we can do much to advance the momentum and attention on preeclampsia. A report is being developed now, but even better, participants are continuing to generate numerous ideas about how to grow the consortium and develop themes and projects we can rally around.

Warm wishes,

Eleni Z. Tsigas
Executive Director

 
Hits: (130)

Unless you have been completely untethered from all media this week, you know that a popular character on British historical drama Downton Abbey died from postpartum eclampsia, shocking and devastating over 8 million devoted viewers. In her death, Lady Sybil became our unwitting celebrity spokesperson!

With advance knowledge of this surprising plot element, thanks to our sister organization in the UK where the show aired last fall, our team developed a simple but savvy public relations campaign, including an Op-Ed piece in the Daily Beast, a press release, a newly released Health Information article, and social media strategy centered around Twitter and Facebook. Our ability to anticipate the firestorm of attention Lady Sybil's death allowed us to ride the tsunami of national and major market media coverage, Twitter, Facebook and blogs that discussed the episode after its Sunday night airing on PBS.

When I asked our resident social media guru, Laney Poye, what she thought was the most important result of this campaign, she said, "It was heartening to see the Foundation positioned by other influential organizations as the go-to public resource for more information about preeclampsia and eclampsia. For example, groups like the American Public Health Association and Masterpiece Theater PBS referenced the Preeclampsia Foundation to assist their hundreds of thousands of followers in understanding the medical reality of the fictional show."

She continued, "We had more than 400 'retweets' of our original Twitter content related to Downton Abbey and had over 22,000 new website visitors in just three days."

Although many disgruntled fans who missed the show complained of 'spoilers' in the headlines the next morning, we were gratified that an even larger audience responded with heartfelt personal accounts, sometimes reawakened grief, but mostly enlightened gratitude for our timely, credible and informative perspective. Our work to be in front of the conversation on preeclampsia and eclampsia shifted the worldview of hundreds of thousands of people as they now know that this common complication of pregnancy, 100 years later, is still taking the lives of mothers and babies and seriously threatening many more. And they know that there's something that can be done about it. We need to empower women with knowledge, advocate for a patient-provider partnership, and improve health care responses - all part of the Foundation's current assignments, and clearly evident in the social media dialogue over the past few days.

"The fact is that a POPULAR TV show (on both sides of the pond) used preeclampsia ACCURATELY as a plot point is actually extremely important. Think about how many people now know about it who may not have even heard of it before. It brings the information to light."

~~~~~

"The mother of my godson died from preeclampsia shortly after she gave birth in 2003. It manifested atypically, and she was actually admitted to the hospital by her astute eye doctor after her OB-GYN blew her off (it was labor day weekend - the doc told her she was overreacting). 3 days later she was dead. So, yeah...it still happens."

~~~~~

"Dumb article? I think not. I wish every day I had been made aware of the signs and symptoms of pre-eclampsia. Don't just assume your care provider has it under control. Educate yourself."

I watched the reaction to our media campaign with amusement and pride. Never before had we so successfully leveraged a fictional event to draw massive public concern for our cause. I know that it will be short lived, even as responses to real life tragedies often are. But when the sound and fury dies down, the Preeclampsia Foundation will still be here, telling our stories and inspiring researchers, policy makers, women and their care providers to action. And I'm confident in and grateful to our mission partners - like my Op-Ed co-author Christine Morton from CMQCC - who will help lead the way.

I'd much rather have my emotions sucker-punched by the death of a fictional character than by the loss of a loved one to the many real-life families who turn to us for support and information. It is for you that we continue our good, hard, even sometimes thankless, work. Please, if you haven't yet, consider joining with us as a volunteer, donor, advocate or mission partner.

Warmest wishes,

Eleni Tsigas

 
Hits: (95)

It's March... which in Florida means spring training for Major League Baseball. In fact, I can practically hear the crack of the bat just ten minutes from our headquarters! But the real home runs are happening for the Preeclampsia Foundation all across the country. We're halfway to Preeclampsia Awareness Month, and our Promise Walk teams all across the United States are knocking it out of the ballpark!

Fundraising teams have used our new tools and are doing a superb job, putting our Promise Walk $7,000 ahead of where we were last year. And not only will we be celebrating our first-ever national designation, but 16 states and cities have declared May Preeclampsia Awareness Month in their jurisdictions. Read on for an interesting article that describes why that is so important to our advocacy work. I'm also trying really hard not to spill the beans on two exciting announcements we'll have in May, plus oodles of fun events like Twitter chats, blogs, and virtual campaign buttons with content partners, which you'll hear more about next month.

 

Later this month, we'll be at the 60th Annual Meeting of the Society for Gynecologic Investigation, announcing new funding for research grants and providing investigators a sneak peek at a new research tool we're developing. It's a source of deep pride that the Preeclampsia Foundation has funded over half a million dollars in research, delivering on its mission to catalyze research. Members of our Medical Advisory Board recently met and adamantly reinforced the important gap that the foundation is filling through our Vision Grant program.

 

What makes this possible? It is because we have amazing volunteers working hard, having fun, being creative, and always leaning into the edge of possibility to raise the money and make the connections that make these programs achievable. To each of them we give enormous thanks!

 

Although awareness is our "theme" this month, I fear that term tends to get overused and the impact of what awareness-building can accomplish gets lost. The collective work of every supporter, fundraiser, volunteer, researcher, physician, nurse, midwife - in short, every friend of the foundation has contributed to a growing awareness that preeclampsia will no longer be left as a footnote in pregnancies. It is not orphaned. It is not rare. It is not inconsequential. It is worthy of progress, attention, funding, education, and public awareness. It is worthy of the main stage. And you - no matter your role or responsibility - have played a critical role in raising the awareness that has allowed us to accomplish much.

 

Warmest wishes,

Eleni Tsigas

 

Hits: (92)

LETTER FROM THE EXECUTIVE DIRECTOR, ELENI TSIGAS

It's hard to imagine the impact that a public awareness event like The Promise Walk for Preeclampsia™ can have on the consciousness of the public, our elected officials, health care providers and researchers, but with 44 walks scheduled in major markets across the United States, we are making strides and delivering hope!

Ten years ago, I daresay not too many people had heard the word "preeclampsia." Now the media often cover the latest research or provide helpful education, for example, CNN's February article on five things you need to know about eclampsia, and stories about real lives that have been impacted, like these Kansas City and Dallas mission family stories.

We are enormously grateful to our national sponsors who join hundreds of regional and local sponsors to make this event possible and contribute to the impact we are making! Interestingly this year, I feel a personal connection to all our 2013 national sponsors:

  • BabyCenter has an extremely robust website, used by about 80% of all pregnant women and is the top referral site (apart from search engines) to our website. Thank you to our national media sponsor and for naming us one of their Global Giving partners!
  • After my first son was born with a straw-sized dried-up umbilical cord (how he thrived is beyond me!), I researched cord blood and found out that it is a rich repository of stem cells, providing oodles of controversy-free building blocks that could advance medical research. Determined to harvest cord blood from any other pregnancies I might have, my second son was born with a veritable "fire hose" making the local cord blood bank all the richer! ViaCord from PerkinElmer also believes in the power of cord blood, and we're grateful for their support of The Promise Walk.
  • And, what brand of infant and toddler car seats did I purchase when my sons were babies? That's right - Britax, whom we welcome to The Promise Walk and to the Preeclampsia Foundation as a first year national sponsor. Their focus on the health, safety and well being of our babies is a shared passion. Thank you, Britax!
  • Finally, Creative Counsel, based in Portland, Ore., is owned by a dear friend who has consistetnly provided us with the most competitive prices for our t-shirts and other merchandise for several years. He and his wife, Jennifer, were married on a day that, for my second pregnancy, turned into a horror as I left their wedding and went home to cry over a sure-to-be pregnancy loss. It's a scary story that ended well - my baby survived, not only that mid-pregnancy scare, but also a severe case of preeclampsia, to become my now delightful teenage son. We're so thankful for Creative Counsel's continued support!

That may sound like a lot of disconnected threads, but it all comes together to fill my heart with gladness and gratitude. It truly takes a community of caring to move the needle. Thank you readers, for allowing me to get a bit personal with my experiences!

Another indicator of the impact the Preeclampsia Foundation is having is evident through our presence at major medical science conferences.

What do we have that researchers want?

When I first started doing this work about a decade ago, I would attend a medical meeting where introductions went something like this:

Me: "Hi, I'm Eleni Tsigas with the Preeclampsia Foundation."

Them: Eyes glazed over. "Huh? There's a foundation for that?"

Last week in Orlando at the annual international meeting for the Society for Gynecological Investigation (SGI), it went more like this:

Me: "Hi, I'm Eleni Tsigas."

Them: Blank stare. (Well, OK, not everybody. Some smiled.)

Me: "With the Preeclampsia Foundation..."

Them: "Oh yes! We know you well. You do great work! You have a great website! When are your research grant applications due this year? Can we partner with you on..."

We were at SGI to preview a database that will provide an important asset to the research world very soon. Our ability to tap into the vast troves of information from preeclampsia survivors around the world had the rapt attention of investigators. Our ability to stay in touch with survivors and their children presents a unique value, nearly unparalleled by any other repository of information and biological samples. Stay tuned for the launch of this registry this summer and how you can be part of it and the future of preeclampsia research.

And never underestimate the thread of connections that we each weave with our lives!

Warmest wishes,
Eleni Tsigas

 

Hits: (104)

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

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

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

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

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

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

Promise Walks - Making Strides, Delivering Hope!

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

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

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

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

5 Weeks of Themes

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

  • Week 1: Driving awareness, at home and abroad
  • Week 2: Educating and empowering expectant mothers
  • Week 3: Highlighting heart health for moms
  • Week 4: Accelerating research for a cure
  • Week 5: Changing the face of health care quality

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

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

Eleni Tsigas

Executive Director

 

 

 

Hits: (27)

Margaret Meade once said, "Never doubt what a small committed group of citizens can do to change the world. Indeed, it is the only thing that has."

At the Preeclampsia Foundation, we like to say, "Never doubt what a large cohort of preeclampsia survivors can do to catalyze research. Indeed, it is the only thing that will."

Welcome to our Special Research Edition of Expectations.

I've heard thousands of stories with poor outcomes that started with "If only I had known" or "If only I had known and pushed harder to be taken seriously." What women wanted to know were the signs and symptoms of preeclampsia. With that information, they would have immediately responded to that unrelenting headache or the searing pain running up over the shoulder. They would have known to push back, if their complaints weren't taken seriously, with a request to be have their blood pressure checked, be seen by an expert, or have blood drawn for analysis.

After so many stories, we initiated research to quantify what we already knew anecdotally regarding the need for patient education. Our own 2008 "Lack of Preeclampsia Awareness Study" and studies performed by Dr. Whitney You and published in 2011 in the American Journal of the Obstetrics & Gynecology, confirmed our suspicion that not enough women are informed about preeclampsia, and even if they are informed, comprehension is poor.

Thus began an active part of our mission: patient education. Those outcomes are now being realized as the professional organization that board certifies the majority of our nation's obstetricians will be formally recommending patient education as a regular part of prenatal and postpartum care. Our Illustrated Preeclampsia Symptoms Tear Pad has been included in a California state-wide collaborative, CMQCC, that is intended to reduce maternal deaths.

Improving patient education tools and methods is just one way that women affected by preeclampsia -- our "cohort" -- identified a problem and then worked to change it. (Our work in patient education is definitely not done, but enormous progress has been realized.)

But can preeclampsia survivors advance medical research? Can we push scientists more quickly to a prevention, a cure, or an intervention (other than delivering the baby)?

Before the summer is out, we will be launching The Preeclampsia Registry, a living data source of patients and family members, to accelerate research.

There is plenty of precedent that citizen scientists, armed with their own "stories" and DNA, have successfully isolated genes responsible for their disease, or identified useful therapies. We, too, can catalyze research, equip researchers with novel hypotheses and a cohort -- a cohort not just willing, but impatient to see progress and to use their own cases as the enabling data.

What's ahead for The Preeclampsia Registry?

Approximately 100 "beta users" have already enrolled in the registry to help us test the technology. We have already secured approval from our Institutional Review Board. Before the summer is over, the registry will be open for public enrollment, including international registrants. Participants will include those directly affected and their female relatives who will enter self-reported information, upload medical records, and, in Phase 2 (planned for next year), biological samples such as DNA.

Researchers will be able to do studies over long periods of time, across geographical boundaries, and within various demographic groups.

How can you participate?

1. Check back often at www.PreeclampsiaRegistry.org for the upcoming announcement about the Registry's public launch.

2. Participate in our soon to be announced Patient Advisory Council, a diverse group of affected individuals who will influence research questions.

3. Give a gift to the Preeclampsia Foundation and, if you wish, earmark it for The Preeclampsia Registry.

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!

Warmest regards,

Eleni Tsigas
Executive Director

 

 

Hits: (112)

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 Oil, Augusto Odone was reported in CNN correspondent (and preeclampsia survivor) Elizabeth Cohen's blog to have said, "I've received thousands and thousands of letters from people who were inspired by the movie They each had their own diseases, but the common idea was the movie inspired them to be active, to be proactive, to find out more about their own diseases."

During patient-centered care month - and always - I appreciate the Preeclampsia Foundation's motto: "know the symptoms, trust yourself." As patients, we have the power to influence our medical care and, in some cases, our outcomes. And, we have to do it. We have to actively engage and use our brains, common sense, and even the Internet to help understand conditions that are affecting our pregnancies and our lives. The big screen has shown us remarkable accounts of patient advocacy that illustrate the catalytic role that average citizens can have on advancing research for complex medical conditions. These compelling stories should be more than enough inspiration for us to take on the role ourselves.

Lorenzo's Oil (1992) tells the story of Lorenzo Odone who at the age of 7 began suffering blackouts, memory lapses, and other strange mental incidents. He was eventually diagnosed as suffering from adrenoleukodystrophy (ALD), a rare nerve disease that strikes only little boys and was always fatal.


Frustrated at the failings of doctors and medicine, Lorenzo's parents, Augusto and Michaela Odone (played by Nick Nolte and Susan Sarandon), begin to educate themselves in the hope of discovering something which can halt the progress of the disease. Knocking on doors, haunting research libraries, reading everything, talking to the parents of other sick children, using intuition, and even convening a workshop with scientists from various medical disciplines they actually discovered a treatment of the disease, employing simple olive oil.

More recently, Extraordinary Measures (2010) was inspired by the true story of John Crowley (played by Brendan Fraser), a man who defied conventional wisdom and great odds to pursue a cure for his children's life-threatening condition called Pompe disease. Pompe is a genetic anomaly that kills its victims before their tenth birthday. In 1998, this often fatal neuromuscular disorder was so rare that no company had yet developed a medicine to combat it. John Crowley raised more than $100 million dollars to launch biotechnology companies to develop the cure. Crowley contacted Robert Stonehill (Harrison Ford), a researcher in Nebraska who had done innovative research for an enzyme treatment. He had little money to fund his laboratory, and a thorny personality that drove away colleagues and funders. John and his wife Aileen raised money to help Stonehill's research and the required clinical trials. Crowley took on the task full time, working with venture capitalists and then rival teams of researchers. Eventually, clinical trials began and to avoid a conflict of interest associated with his children participating in his own company's trials, Crowley quits his job. His children are now 13- and 14-years-old.

Taglines for each of these films focus on miracles ("Some people make their own miracles" associated with Lorenzo's Oil and "Don't hope for a miracle, make one." with Extraordinary Measures) and show us the courage and imagination that people can summon when they must. When doctors urge dying patients to have patience while research continues into a cure for their disease what they are really saying is, "please be patient enough to wait until after you death while we work on this." That kind of thinking was just not enough consolation for the Odones and the Crowleys when their children were struck sick.

These families decided to take on Herculean efforts when confronted with the medical conclusion "there is nothing more we can do." These stories are certainly amazing examples of patients inspiring research. But, equally important, they are about how to give people hope - or how they give themselves hope when no one else will.

 
Hits: (52)

Thank you for your fantastic Promise Walk support in 2013! Everyone's amazing dedication and hard work brought us just shy of reaching our $500,000 goal -- and there is one more opportunity this year to build upon this already impressive fundraising total. That's through Employer Matching Gift Programs.

So far, employer matching contributions donated during the 2013 Promise Walk season have totaled nearly $10,000!

An Employer Matching Gift Program is one where an employer matches an employee’s charitable donation, usually dollar for dollar. Some companies call this a Cash Grants Program or a Matching Grants Program. These Gift Programs can quickly multiply the impact of one employee’s donation, often quite substantially. In some cases an employer may even match up to 2 or 3 times that of the employee’s donation. But even a 1:1 match is incredibly impacting. Along with matching monetary donations, some employers even have programs wherein the company will match qualified volunteer hours with an assigned cash amount.

It is the responsibility of employees to get the “Matching Gift” process started with their employers. Some employers provide their Company Match Program guidelines online, or will supply the information through the Human Resources office. There are even companies out there that will match donations of retirees or employee spouses. An added pleasant surprise is that most employers make this process relatively simple, and usually request minimal documentation (normally only requiring an official donation receipt as well as completion of a quick online form or a one-page matching gift form).

Most employers have stipulations in place regarding minimum or maximum annual donation amounts, and may have other specific requirements, as well. It is the company’s choice as to how the Matching Gift Program is constructed. But any amount of matching gift will make a positive impact on a non-profit foundation.

Please investigate your employer’s policies, and ask your friends and family members to research their employers’ giving program policies as well!

Hits: (80)

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.

Research Resources

Research Funding Available

JOIN OUR MAILING LIST. We respect your privacy.