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It only takes a moment to diagnose life...
Summer 2004 Newsletter
Vision and Mission
To create a world without vasa previa deaths while supporting those whose lives have been impacted by it. To raise awareness about vasa previa and to adjust the medical guidelines and protocols in such a way that fatal outcomes associated with vasa previa can be prevented. The International Vasa Previa Foundation believes that infant death due to vasa previa is an avoidable tragedy. IVPF recommendations are based on the consolidated results of science, technology, and its experience with hundreds of vasa previa families. Infant death and injury can be prevented when vasa previa is prenatally diagnosed and Cesarean section is performed at 35 weeks.
Research on Vasa Previa
IVPF's participation in the most recent research study on vasa previa is a resounding success! As originally suspected, the data proves beyond a doubt that prenatal diagnosis is the only assurance of survival for vasa previa babies. IVPF attended the American Institute of Ultrasound in Medicine's annual convention that took place in June 2004. Yinka Oyelese, lead author of the research paper, presented its findings during this conference and the information was well received. Most doctors see vasa previa at most only once or twice in their entire career. Our presence at this conference had a big impact. This research paper would not have been completed without the help of all our members who submitted their information to the researchers. Thank you once again for your invaluable help!
“This study, being the largest ever attempted on vasa previa, is proof positive that prenatal diagnosis is vital for survival of this condition. The International Vasa Previa Foundation hopes it will have far reaching effects in saving infant lives.” -Amy Gaghagen, President of the International Vasa Previa Foundation
The paper was published in the American College of Obstetricians and Gynecologist's Green Journal and is called 'Vasa Previa: The Impact of Prenatal Diagnosis on Outcomes'. IVPF has a few reprints available. We will be happy to send you one if you send us your name and postal address requesting one.
Spotlight on Sophie's Walk for Vasa Previa 2004- August 22, 2004
The International Vasa Previa Foundation's most important fundraiser of the year will take place on August 22, 2004. Volunteers from the IVPF, friends, and sponsors will come together to walk in cities around the world. Last year more than 500 people walked in 33 cities worldwide, raising almost $25,000 for education and awareness of vasa previa. But there is still so much more to be done. Please consider organizing a Walk in your city this year! The Walk will take place on Sunday, August 22, 2004. If you are interested in organizing a Walk, or just collecting donations and walking privately with your family and friends, please contact us immediately at sophieswalk@.... Your efforts go a long way towards creating the awareness necessary to stop these senseless deaths.
Other News
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'Vasa Previa: The Impact of Prenatal Diagnosis on Outcomes' was published in the May edition of the American College of Obstetricians and Gynecologist's Green Journal. This study could not have been completed without the help of the many families that make up the IVPF.
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Diagnostic Imagine Online's June 29, 2004 report on the AIUM's annual convention included an article about the study presentation given at the convention. Report from AIUM: Prenatal ultrasound diagnosis averts fetal deaths from vasa previa.
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Tracy Noseworthy has accepted a position with the IVPF as Assistant Secretary. Thank you Tracy for you devotion to this important cause!
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IVPF is growing. There are currently 70 participating members, 269 receiving this newsletter, and 164 Vasa_Previa email group subscribers.
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You can now make your donations to the IVPF through the internet via paypal. Click here to donate to IVPF with PayPal. Its fast, easy and secure.
Chat
The IVPF chat room is open to everyone who would like to talk about vasa previa and their experiences. Chats are currently scheduled for the following days and times. But feel free to stop by anytime, there might be someone there. Contact Cindy.Paris@... if these times are inconvenient for you or you would like to volunteer to host a chat yourself.
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Saturdays |
Wednesdays 20:00 hrs GMT (8:00pm Greenwich Mean Time) 21:00 hrs Netherlands (9:00pm) 15:00 hrs EST (3:00pm Eastern Standard Time) 14:00 hrs CST (2:00pm Central Standard Time) 12:00 hrs PST (12:00 Pacific Standard Time) |
There is also a members' meeting the first Wednesday of every month. These meetings are conducted in the above chat room and are a pipeline right to the Foundation's officers. The members' meeting times vary each month in order to accommodate time differences of IVPF members around the world. Keep an eye out for email notices about the timing for these meetings each month. Reminder notices are sent out through the Newsletter email group. NOTE: The monthly members' meetings have been put on hold during the summer. The next meeting will take place on Wednesday, 1 September 2004 at 19:00 GMT (1pm CST).
Stories needed
If you've visited the IVPF website before, you might have noticed that there is a page with stories of vasa previa survivors and angels. These personal experiences give a very good view on how vasa previa happens, its dangers, and how it can be managed. It is very useful for everyone who wants to read more about vasa previa. If you want to help the world to get a better insight on vasa previa, please send your story to Info@... and give us permission to publish it.
Volunteers needed!
IVPF committees are hard at work spreading the word about vasa previa. We are still in need of volunteers for the different committees. Click here to access a current list of all committees and members. If you are interested, please contact the appropriate committee chairperson for more information or send an email to Info@.... Specifically we are currently looking for people to help in the following areas:
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Participating Members
IVPF needs participating members to help run the organization through committee work and by voting on important issues. Please contact us at Info@... if you would like to be a participating IVPF member! -
Research Committee
We are looking for a new Chairperson for the Research Committee as well as volunteers to post IVPF information on internet pregnancy boards and forums, to collect vasa previa stories from the internet, and to look for newly published information about vasa previa. Contact Research@... -
Public Relations Committee
The public relations committee is looking for volunteers to set up International Vasa Previa Foundation informational booths at women's health fairs and medical seminars, and good writers to submit vasa previa articles to major magazines. If you can help with these activities, please contact the committee chairperson at: Victoria.Goldstein@... -
Fundraising Committee
We are looking for volunteers who are enthusiastic and willing to help us achieve our goals. If you want to contribute to the IVPF by donating a few of your hours per month on applying for funds and charities, please let us know. Send an email to info@....
Did You Know .....
One theory on how vasa previa forms is trophotrophism. As the placenta remodels away from the lower uterine segment, where the vascular environment is poorly suited to placental development, moving up towards more vascularly rich areas of the uterus, and atrophies in the areas of the cervix, it can leave a velamentous cord insertion or multiple lobes to the placenta connected by velamentous vessels crossing the os - vasa previa. More information on trophotrophism can be found on the frequently asked questions page on the IVPF website.
One theory on how vasa previa forms is trophotrophism. As the placenta remodels away from the lower uterine segment, where the vascular environment is poorly suited to placental development, moving up towards more vascularly rich areas of the uterus, and atrophies in the areas of the cervix, it can leave a velamentous cord insertion or multiple lobes to the placenta connected by velamentous vessels crossing the os - vasa previa. More information on trophotrophism can be found on the frequently asked questions page on the IVPF website.
Other Stuff
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There are two levels of membership open to the public. The first is general membership and simply belonging to one of the email groups automatically entitles you to general membership. There is no obligation other than to support IVPF goals. The second level of membership is participating membership. We would love to have each and every one of you as participating members! Again, there are few obligations. The main one being that you will be responsible for voting once per year for IVPF directors. At this time there is no fee to join. If you would like to join IVPF at the participating level, please send your request to info@...
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The International Vasa Previa Foundation sponsors an email discussion group. It is called Vasa_Previa and is open to anyone who's experienced vasa previa in any way. Click here to visit and subscribe to this group. Please be prepared to briefly explain your vasa previa story before we approve your subscription to this group.
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Click here to access the IVPF Executive Meeting Minutes online
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Feel free to react on any subject in this newsletter. Amy, Victoria, Cindy, and Debi can be reached at Info@.... Help us save babies by raising awareness of vasa previa. Send your donation to:
International Vasa Previa Foundation
P.O. Box 272293
Boca Raton, FL 33427-2293
IVPF Website: http://www.vasaprevia.org
IVPF Forum: http://www.vasaprevia.org/forum
IVPF Chat Room: http://www.vasaprevia.org/coolcafe/login.asp
E-mail: Info@...
Links Mentioned in this Newsletter:
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Vasa Previa: The Impact of Prenatal Diagnosis on Outcomes
http://www.greenjournal.org/cgi/content/abstract/103/5/937 -
Diagnostic Imagine Online, June 29, 2004
Report from AIUM: Prenatal ultrasound diagnosis averts fetal deaths from vasa previa
http://www.diagnosticimaging.com/dinews/2004062801.shtml -
IVPF Website
http://www.vasaprevia.org -
Newsletter Email Group
http://groups.yahoo.com/group/IVPF -
IVPF Committee Assignments and Descriptions
http://www.vasaprevia.org/Docs/IVPFcommittees.PDF -
Frequently Asked Questions about vasa previa
http://www.vasaprevia.org/faqs/faqs.htm -
Vasa_Previa email discussion group
http://groups.yahoo.com/group/Vasa_Previa -
IVPF Executive Meeting Minutes
http://www.vasaprevia.org/minutes/index.htm
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