A woman turns tragedy into gowns for our littlest angels
By Eleni Tsigas, Executive Director
Preeclampsia affects both mother and her baby in many ways. One of the most devastating outcomes is the death of that child.
The loss of a baby - either through stillbirth, around the time of delivery, or after days or weeks in the NICU - leaves a family devastated, charting new territory, and wondering how to move forward emotionally, but also practically. Major decisions about planning a funeral, having last moments or photos with your baby, what to name your child, all can be crippling when your heartache is so big you can't put a coherent thought together.
Sending a family member or worse yet, going yourself, to your local Babies 'R Us to find an outfit for your baby - the first and last he or she will ever wear - has left many in anguish as the sounds of joy and laughter fill the store. Finding a teeny tiny outfit for a micro-preemie or even the right kind of outfit for a full-term baby is nearly impossible.
A sensitive and much-needed service - Angel Gowns - is available in many parts of the US, usually supplying the hospitals directly with a variety of outfits and sizes. In some cases, the service is available directly to the families in need.
Watch and donate this holiday season -- for all the faces of preeclampsia!
Faces of Preeclampsia come in all shapes and sizes. They're preeclampsia and HELLP syndrome survivors, and the mothers and babies who didn't survive. They're the families and friends of those impacted by this condition that can affect any woman, any pregnancy.
Watch this video to listen to their stories, which may be similar to yours. Please donate to the Preeclampsia Foundation this holiday season and be part of the progress we're making. Help us keep families whole.
After a two-year effort, Congress took a major step forward toward passing extensive legislation titled The 21st Century Cures Act to accelerate the development of and access to treatment for rare diseases and other conditions in need of biomedical innovation. The bill aims to boost funding for research at the National Institutes of Health and for drug and device review and approval processes at the Food and Drug Administration, while also addressing policies that will positively impact maternal health and address mental health as well as opioid abuse. The legislation passed the House of Representatives in late November, and it is expected to pass the Senate and be signed into law by President Obama in early December.
The legislation covers two areas directly tied to the Preeclampsia Foundation's advocacy efforts. It addresses federal policy for the protection of human subjects, also known as the "Common Rule," which establishes research parameters for clinical trials. Earlier this year, the Foundation submitted comments to the Department of Health and Human Services requesting support to improve research requirements to advance clinical trial work, particularly in a field like preeclampsia research. The legislation also addresses the glaring lack of existing research into the safety of prescription drugs and other medications used by pregnant and lactating women, forming an interagency task force to address this significant knowledge gap.
The Foundation is a member of the Coalition to Advance Maternal Therapeutics, a group of national advocacy organizations that has been working to educate Congress about the need to address the lack of data and information about the implications on both maternal and infant health and well being. The Foundation wants to ensure the new task force will advance efforts to establish new safety labeling for prescription drugs while also supporting a pathway for the discovery of safe and effective therapeutics for pregnant women to manage conditions like preeclampsia.
Thanks to you, #GivingTuesday was a success!
We're so thankful for your generous donations on #GivingTuesday, a global day of giving back celebrated this year on November 29. We raised
$10,313 on our first-ever #GivingTuesday appeal, surpassing our goal of $10,000!
Special thanks also to our caring doctors on the Preeclampsia Foundation's Medical Advisory Board who kicked off #GivingTuesday by
matching all gifts up to $10,000! With their matching dollars, that means we raised a total of
$20,313 in one day!
Thank you so much. Together, we can eliminate preeclampsia and other hypertensive disorders of pregnancy -- it's a mission that matters.
Preeclampsia Foundation helps set agenda for national maternity care caucus
The U.S. Congressional Caucus on Maternity Care, a coalition of members of Congress serving in the U.S. House of Representatives, invited the Preeclampsia Foundation to participate in a meeting to help set the Caucus' agenda in the upcoming congressional session (2017-2018).
As one of 15 national stakeholder organizations present, the Foundation shared the importance of focusing on issues that will allow for continued innovation to develop new treatments and cures for preeclampsia, and reduce the risk of maternal mortality and severe morbidity in the United States. The Caucus is led by Congresswomen Jaime Herrera Beutler (R-WA) and Lucille Roybal-Allard (D-CA), both of whom are long-term supporters of the Preeclampsia Foundation's goals and responsible for the establishment of May being designated on the national health calendar as Preeclampsia Awareness Month.
Before saying farewell to 2016, The Preeclampsia Registry team would like to thank those of you who contributed your time and information to the registry. You are making a difference by helping researchers gain valuable information from your pregnancy experiences. Thank you.
We hope you can find a few minutes to update your information in the registry and submit any recently completed surveys or questionnaires.
Foundation volunteer invited to join state quality collaborative
Preeclampsia Foundation Patient Advocate Jennifer Heiniger recently got a new role that was facilitated by Executive Director Eleni Tsigas. Jennifer is now working with the Illinois Perinatal Quality Collaborative as a Patient-Family advisor after attending their recent one-day conference on quality improvements. As an advisor, Jennifer will provide patient perspectives for the collaborative's efforts to decrease maternal and infant illness and death in the state of Illinois.
Along with being an active team captain and volunteer with the Chicago Promise Walk and 5K Run, Jennifer attended our 2016 Patient Advocates Summit this fall, where she joined dozens of other preeclampsia and HELLP syndrome survivors to learn skills for engaging their local communities in awareness, education, and quality improvement efforts.
Congratulations and thank you for your service, Jennifer!
Ho-Ho-Ho! Holiday sale in the Marketplace!
Get your favorite preeclampsia and HELLP syndrome awareness and educational products at a 15% discount this holiday season! All Marketplace items on sale! It's the perfect time for a holiday gift that also gives back to a great cause.
Take 15% off your order with coupon code
15Holiday. Offer valid through December 31 so act now!