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ADVOCACY AND AWARENESS 

Ireland Declares First National Preeclampsia Awareness Day  

Executive Director Eleni Tsigas visited Ireland in early July as a guest of the Irish National Fetal and Neonatal Translational (INFANT) Research Centre based at Cork University Maternity Hospital.  The visit coincided with Ireland's first national awareness day for preeclampsia, which received extensive support and media coverage (see link below).

While there, Tsigas met with government, research, clinical and industry parties to highlight the need for greater awareness about the condition in Ireland. She also met with preeclampsia survivors to discuss the formation of a patient advocacy group. Currently there is no representative body or organization in Ireland that acts as a voice for preeclampsia awareness, information, and support for preeclampsia survivors.

"I'm delighted to be working with the Irish government and industry, particularly the INFANT Research Centre and Metabolomic Diagnostics, to help raise symptom awareness and encourage more people, male and female, providers, and friends, to recognize this potentially fatal illness," said Tsigas.

Ireland's Minister of State for Research and Innovation Sean Sherlock, Eleni Tsigas, and Diarmuid Cahalane of Metabolomic Diagnostics visit baby Isabela, born at 32 weeks, in the neonatal ward of Dublin's Rotunda Hospital.
 
Awareness Key to Saving Lives

Metabolomic Diagnostics is an innovative biosciences company involved in the development of breakthrough technology that will provide predictive screening for preeclampsia in early pregnancy.  The technology is the brainchild of Professor Louise Kenny, who, with Professor Geraldine Boylan, co-directs the INFANT Research Centre.

"Through our research, we have seen first-ha
nd the deadly health consequences of preeclampsia," said Diarmuid Cahalane, Head of Regulatory Affairs for Metabolomic Diagnostics.  "We are working on an early diagnostic test that has the potential to revolutionize prenatal care globally, however, in the interim period of this test being available, awareness is key to saving lives, and we are delighted to be working closely with the Preeclampsia Foundation and industry partners in this regard."

Ireland's first national awareness day for preeclampsia is a step in the right direction.

"Making people in Ireland aware of the warning signs of preeclampsia will save lives," said Tsigas at the launch of National Preeclampsia Awareness Day.  "The Foundation's quest for heightened awareness of preeclampsia goes beyond our US borders and we welcome efforts to spread the word internationally."

Irish Media Spreads the Word

Extensive media coverage marked Ireland's first National Preeclampsia Awareness Day with broadcast, online, and print outlets spreading the word about preeclampsia and its warning signs.  Click on this link for a representative article published online by The Journal.  

GETTING INVOLVED 

2014 Promise Walk Celebrates Success   

The 2014 Promise for Preeclampsia season was another banner year thanks to all of you!
  • $470,000 Raised
  • 4500 Participants in 37 locations
But you don't have to take OUR word for it!

"This event was really important for my family, something positive to do after two years of grieving for my sister while raising her daughter."

"...thank you for sharing the stories, the doctor's information, and making my first walk for a cause so special, something that really touched me and my family."

"This year's event was the best ever...the location provided more opportunity for public awareness. It was very organized and [the coordinator] was welcoming to all who attended..."

"Location is a perfect site... the walk around the lake lends itself to a kind of serenity - almost as if the water washes you over with this sense of peace and simultaneously makes you feel strengthened."

What were YOUR favorite memories made at this year's walk?
Go tell us on the Promise Walk for Preeclampsia Facebook page!

RESEARCH NEWS

The Preeclampsia Registry Growing  

We've made substantial progress with The Preeclampsia Registry since last month and now have 925 enrolled participants.  This living database brings together those affected, their family members, and researchers to advance knowledge and discover preventions and treatment for preeclampsia, HELLP syndrome, and related hypertensive disorders of pregnancy.

We're asking participants of The Preeclampsia Registry to upload their medical records, which makes the information collected even more valuable for scientific research by confirming your information with clinical or hospital records. As always, this information is never shared with qualified investigators without de-identifying it first. Your personal information is fully protected as explained in The Preeclampsia Registry's informed consent process.

It's as Easy as One, Two, Three

To Enroll:
  1. Go to www.preeclampsiaregistry.org and complete the online registry questionnaire
  2. Allow us to gather information from your medical records
  3. Return to our website at least yearly to provide an update

To Upload Your Medical Records: 

  1. Contact your healthcare providers to check if they offer online portals for patients to access, download, and share their medical records (if this service isn't available, gather your medical records directly from your providers)
  2. After you've enrolled, log onto www.preeclampsiaregistry.org and go to "MyRegistry"
  3. Use the "Upload Medical Records" feature 

For more information on secure online electronic access to medical records, visit http://www.healthit.gov/ or watch this video:

Updated: Health IT for You: Giving You Access to Your Medical Records When and Where They're Needed
Updated: Health IT for You: Giving You Access to Your Medical Records When and Where They're Needed

   

New Feature Shows How You Compare

 

Enrolled participants can also now explore the many bar graphs and pie charts in the "How Did Others Respond?" section of their MyRegistry page to see how others responded to the Registry questions. For example, they can find out the percentage of participants who experienced similar symptoms, treatments, and outcomes.

 

Take this pie chart as an example: It shows responses to the question, "Did you receive treatment with magnesium sulfate during this pregnancy?" As you can see, 75 percent of respondents indicated yes, 20 percent answered no, and five percent either didn't know or didn't answer.

 

 

For more information, please visit www.preeclampsiaregistry.org

JULY 2014
Note Our New Address!

We've officially outgrown our administrative offices, which have been home to the Preeclampsia Foundation headquarters for nearly five years. Fortunately, we will be gaining twice the space for decreased cost in a nearby building. Helping the dollars you raise go further! 

Please note our new address:
6905 North Wickham Road
Suite 302
Melbourne, FL  32940

Our phone numbers remain the same:
DIRECT: 321.421.6957
TOLL-FREE HOTLINE: 800.665.9341

Featured Event  
Minneapolis, Minnesota
September 12, 2014
Preeclampsia Toolkit on Display at AWHONN  
  
At the recent Association of Women's Health, Obstetric and Neonatal Nurses (AWHONN) conference, Nancy Peterson talks with Suzanne Weisner of Dignity Health about the California Maternal Quality Care Collaborative (CMQCC) Preeclampsia Toolkit.

Upcoming Activities
 
Want to Learn More About Preeclampsia Research? 

Late October is the ideal time to visit New Orleans!

If you are a survivor or family members interested in meeting with some of the major players in preeclampsia management and research during the International Society for the Study of Hypertension in Pregnancy (ISSHP) 19th Biennial World Congress in New Orleans, Louisiana, please email Laney Poye. With enough interest, we will negotiate with event organizers to host a patient symposium. 

2014 Volunteer Hours

Our volunteers have
reported a total of

3,839

hours so far
this year

Donate While You Shop  

Congratulations, your Amazon purchases through this program earned $60 for preeclampsia research and education in just three months!

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