LETTER FROM THE EXECUTIVE DIRECTOR
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.
AWARENESS & EDUCATION
We are counting on all of you to share messages the Preeclampsia Foundation will be issuing throughout Preeclampsia Awareness Month.
In the April Expectations newsletter we will provide you with a list of easy ways you can help us. They will include sharing posts we make on the foundation's Facebook page, messages we post via the foundation's LinkedIn group, and tweets we make on Twitter.
This month, if you have not already done so, click the following links and join the Preeclampsia Foundation on multiple social media websites.
Preeclampsia Foundation Official Site
Preeclampsia Foundation Supporter Group
Preeclampsia Foundation Twitter Page
HEARD ON THE HILL
One of the wonderful aspects of living in the United States is that you can directly influence the government process at the local, state, and federal levels. This influence only requires passion and persistence. While the Preeclampsia Foundation is thrilled that our collective passion and persistence led to May 2013 becoming the first federally-recognized National Preeclampsia Awareness Month, our work is far from over. We still need your help to secure more state and local preeclampsia awareness proclamations.
You may be asking why a local or state proclamation has value if the federal government already designated the month of May for preeclampsia.
All policy work ultimately begins back home: educating elected officials about preeclampsia -- what it is, why research is needed to identify and prevent it, why new screening and diagnostic tests are essential to identifying and responding to it, and why access to prenatal care is essential to saving the lives of moms and babies. Your efforts to educate state and local officials will establish an educated crop of policymakers for years to come, whether many move on to greater levels in government, or they remain influential in state and local government and can also weigh-in with Congressional lawmakers.
You may have heard the expression "All politics is local." That's because a politician's success is directly tied to his or her ability to understand and influence the issues of his or her constituents. You are the "constituent." No one is more passionate about preeclampsia than a woman who has faced the disease or a family affected by it. Elected officials at all levels of government are bombarded with advocacy requests on every topic. But, public officials are elected by you and work for you; they listen to their constituents first and foremost.
Being an effective advocate for preeclampsia only requires that you share your story. Did you experience this dangerous disease? Did your pregnancy reach severe or critical status? Were you unaware that you had preeclampsia and went undiagnosed, hence putting yourself and your pregnancy at risk? Your advocacy can directly result in support for preeclampsia research funding, health education and literacy campaigns that help reach women and families, coverage for maternal health care services, and so much more.
Seeking a proclamation for your state or city is the first step to building a relationship with your elected officials.
Government proclamations help to bring crucial
awareness and recognition for preeclampsia.
How to Make a Proclamation Request
Search your state or local government's website, using the phrases "proclamation" or "greetings." Many times, your request can be made directly via a website or email.
- Identify your local representatives. The Preeclampsia Foundation's advocacy page has a handy elected official finder and the Foundation can help you request that a local politician attend or speak at your event.
- Use the following templates and examples to create a personalized proclamation.
- You do not have to have a Promise Walk for Preeclampsia in your area to seek a proclamation. Edit accordingly.
Our Proclamations So Far
Here is a list of the proclamations and resolutions we have received so far for May 2013's Preeclampsia Awareness Month.
Pennsylvania, Texas, Utah
State or County Resolutions:
New Jersey (Senate), Pennsylvania (House)
Pennsylvania (Senate), Virginia (House)
Local Proclamations: Addison, Texas
Charlotte, North Carolina
Cherry Hill, New Jersey
Farmer's Branch, Texas
Oklahoma City, Oklahoma
San Diego, California
San Jose, California
Awareness Protects Us
Advocating for yourself can be difficult, partly because focusing on the possibility of illness feels like tempting fate. But as Mr. Rogers sang, scary bad wishes don't make things come true; a plan for what needs to be done next if complications develop is key awareness that protects us and our babies not just during pregnancy, not just postpartum, but also as we age into the future with a higher risk of cardiac disease than we expected. We thank Caryn Rogers, our scientific writer, for reminding us of these two points in the following articles.
Awareness that good outcomes don't always happen helps us prepare while hoping for the best.
Just because a pregnancy is classed as high-risk doesn't mean that it will become medically complicated - and just because a pregnancy is classed as low-risk doesn't mean that it won't. Many of us know this firsthand; we were low-risk right up until the complications developed in our first preeclamptic pregnancy, or went into a subsequent pregnancy classified as high-risk, only to breathe a sign of relief as we delivered a full-term healthy baby.
We've all seen the list of risk factors for preeclampsia: first pregnancy, personal or family history of preeclampsia, underlying conditions like chronic hypertension or lupus or autoimmune conditions, obesity, history of infertility or prior miscarriage. Awareness of your own risk factors is key to managing them prior to and during pregnancy and might lower your risk. For example, chronic hypertensives have a one in four chance of developing preeclampsia, and if they do develop it, their risk of stroke is probably lessened if they began
pregnancy with well-controlled pressures.
Knowing how to access care providers who specialize in medically complicated pregnancies is another sort of awareness. Do you know where the closest NICU is? Do you know how to find a maternal-fetal medicine specialist who conducts research into HELLP syndrome? Do you want to plan to move closer to a particular hospital during your third trimester because of your history and the distance?
We've all seen the risk factors for cardiac disease: high blood pressure, high cholesterol, inactivity, obesity, smoking, and history of preeclampsia. Awareness of your own risk factors is key to managing them as you age and might lower risk of cardiac disease.
A recent analysis of the accuracy of our recall of our pregnancy histories by a team of researchers at the Harvard School of Public Health showed that we may not remember our complicated pregnancies well enough for questions about them to be a useful part of a screening tool. For our recall to be useful as a clinical tool in screening for heart disease, we need to be mostly accurate in our recollections years after delivery. (Imagine a 55 year old in her internist's office this week, asked for details of her pregnancy 30 years ago...) But the analysis also showed that as severity of our pregnancy complications increased, accuracy of recall also increased.
Regardless of whether or not a question about our pregnancy history makes it into a formal screening tool, our awareness of our histories and the risks they pose, communicated to our care providers, is another key to good healthcare. Those of us who do remember, or who have our records, can communicate this risk factor to our care providers and ask for appropriate support.
Knowing how to access lifestyle management tools is another sort of awareness. Do you have a plan for gym time? Do you need statins? Have you had your health evaluated by an internist or cardiologist who knows of your pregnancy history and who understands that your history increases your risks?
"Loss makes artists of us all as we weave
new patterns in the fabric of our lives."
~ Greta W. Crosby
Author of Tree and Jubilee
a book of meditation
Writing about any situation will help you gain perspective on it. Many people find they can identify and express their feelings through journaling. This expression not only contributes to our self-awareness, it also contributes to healing through the letting out of emotions, self-acceptance, and the identification of any negative self-talk patterns that we should and can intentionally replace with positive thoughts.
We get to revisit and revise our thoughts as they ebb and flow. We get to acknowledge our sorrows; speak to, honor and love those we have lost; and find meaning so we can move forward with hope and strength. Writing need not be confined to prose. Prayers, poems, favorite quotations, and drawings often take wing on the pages of our journals.
We invite you to share your writing in the Writing Heals Forum on www.preeclampsia.org.
THE PROMISE WALK FOR PREECLAMPSIA
So many preeclampsia survivors enter a doctor's office or hospital as pregnant women with a concern, a symptom, a feeling something is not right and then many days or weeks later leave the hospital a changed woman touched by this disease in a way they never realized they could be. After all, in this day and age, women and babies don't die, right? You pass the first trimester and it's smooth sailing, right?
Phoenix Promise Walk Coordinator Rafelle Deyle knows all too well that risk is not gone once you cross that line into the supposed "honeymoon phase" of the second trimester. Rafelle was diagnosed with preeclampsia at 25 weeks and three days. Doctors tried to treat her disease and allow time for her baby girl to grow and gain strength, but at 26 weeks and four days, Rafelle was forced to deliver due to her failing health. She left the hospital heartbroken.
Her pain is her own, the exact progression of her disease is her own, but so many of us have followed this similar path and come home from the hospital to search the internet for answers to what happened to us rather than being on the internet like we'd planned to at 26 weeks to check our registries for what new things someone may have bought us.
That common internet search, "preeclampsia," and Rafelle, like many of her preeclampsia sisters, found the Preeclampsia Foundation. She attended the 2011 San Diego Promise Walk for Preeclampsia and experienced a sense of community and support that further inspired her to bring a Promise Walk to her hometown of Phoenix.
In her inaugural year, Rafelle hopes that the Phoenix Promise Walk will bring awareness of the signs and symptoms of preeclampsia. Long term, she hopes to raise enough money to find a cause and cure so other families don't go through what she has gone through.
The Phoenix Promise Walk will offer not only the 3k walk, but also face painting for the kids and a fun cake walk. If you'd like to join Rafelle in Phoenix on May 4th or find a Promise Walk near you, go to www.promisewalk.org to register or donate now.
|The 2013 Promise Walk for Preeclampsia Season is Open!|
|Preeclampsia Study Participants Needed
A University of Vermont study on preeclampsia, a disease of pregnancy associated with high blood pressure and protein in the urine in pregnant women, is recruiting healthy women who wish to conceive. The study will look at how differences in body function can contribute to the development of preeclampsia.
Eligible women must be 18-42, and plan to conceive in the next year. They can either have never had a child before, or have had preeclampsia in the past, have Type 1 diabetes or have a personal or family history of hypertension or preeclampsia.
Ovulation detection kits provided to aid timing of conception.
Financial compensation of up to $375.
"The work of the Preeclampsia Foundation and Promise Walk is dear to my heart because it made me realize that I am not alone and there were other survivors out there. They gave me so much information about HELLP syndrome when I had no clue as to what I went through. The Promise Walk allowed me to connect locally with other women affected by the disease."
~ Kari B.
YTD Volunteer Hours
Our volunteers have
reported a total of
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