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Summer 2003 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 rules and protocols in such a way that fatal outcomes associated with vasa previa can be prevented.
Research on Vasa Previa - Update
Dear Members of the Vasa Previa Foundation, I write to update you about the research that we have been conducting in collaboration with the Vasa Previa Foundation. As you are aware, vasa previa is a relatively uncommon condition. Nonetheless, it is one that is associated with an extremely high perinatal mortality. Until recently, there was very little known about the condition. As a consequence, pregnant mothers and their physicians were often caught unawares, with devastating consequences. The Vasa Previa Foundation made it possible to be able to study the condition in more detail than could have ever been achieved otherwise. So many of you have made incredible sacrifices in obtaining your medical records and making them available to us for this study. The good news is that your efforts have helped tremendously; the study is almost complete, and we hope to submit it for publication shortly. The data are very convincing; vasa previa continues to have a very high death rate for babies when the diagnosis has not been made before the onset of labor. Vasa previa can be diagnosed by ultrasound. When the diagnosis is made before labor, and the baby is delivered by elective cesarean section, almost all babies survive. We believe the results of this study has the potential to help change protocols so that babies will no longer die from this condition. And it would never have been possible without your help. On behalf of the investigators, I thank you. I am sure countless mothers who in the future will have healthy babies will thank you too.
We are hoping that the paper will be submitted for publication within the next month. We do appreciate all those who have contributed their records. There are still records we have not obtained. The more records we obtain, the more convincing the study will be. Therefore I appeal to those who have not yet been able to send their records to please consider expediting the release of their records for this study. Thanks once again for all your help and co-operation.
Very best wishes, Yinka Oyelese, MD
Spotlight on Sophie's Walk for Vasa Previa 2003
The clock is ticking and there are only five weeks left before Sophie's Walk for Vasa Previa takes place throughout the world on August 24th at 8:30 am. This is the Vasa Previa Foundation's most important fundraiser of the year. Volunteers from the VPF as well as friends of some of our members have come together to organize the Walk in cities around the world. This means that during 24 hours, someone, somewhere will be walking for this cause!
Organized walks are taking place in 17 cities worldwide: Austin, TX; Boca Raton, FL; Boston, MA; Chicago, IL;, Dallas, TX; Del Mar, CA; Den Haag, Netherlands; Greensboro, SC; La Paz, Bolivia; Lanarkshire, Scotland; Mexico City, Mexico; Minneapolis, MN; Moline, IL; New York City, NY; Pittsburgh, PA; State College, PA; St. Louis, MO; and Toronto, ON, Canada.
Private walks are taking place in Ankeny, IA; Mclean, VA; Panama City, Panama; Rio de Janeiro, Brazil; Santiago, Chile; and Tegucigalpa, Honduras.
We encourage each of you to join one of the walks if it is taking place in your area or to hold a private walk in your city on August 24th at 8:30 am. To download a brochure or obtain more information about the Walk please visit www.vasaprevia.org/walk.
Other News
- Here are a few of the latest articles published about vasa previa and some of our members:
- Evening Times: Mum's crusade to cut baby death toll
- Kennedy March
- Haagsche Courant: Born out of grief and comfort
- Univision: Vasa Previa: puede matar a tu bebé
- Univision.com: Vasa previa: una condición que puede matar al bebé que estás esperando
- Aetna Intelihealth: Few Pregnant Women Are Tested For Deadly Condition
- Woman's World magazine: An Angel Named Sophie
- The Frequently Asked Questions webpage has been updated and is now available on the website at http://www.vasaprevia.org.
- More and more people are finding the VPF website and email groups. As of 30 June 2003 there are 49 participating members of VPF, 287 subscribers in the newsletter group, and 121 who subscribe to the Vasa_Previa email discussion group.
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You can now make your donations to the VPF through the internet via paypal. Click here to donate to VPF with PayPal. Its fast, easy and secure.
Chat
The VPF 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 VPF members around the world. Keep an eye out for email notices about the timing for these meetings each month. Notices are sent out through the IVPF (newsletter) email group.
Stories still needed
If you've visited the VPF website before, you might have noticed that there is a member page with stories of our 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 VP, including doctors and women who have been diagnosed with it. 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!
VPF committees are hard at work spreading the word about vasa previa. A current list of all committees and members is available at http://groups.yahoo.com/group/IVPF/files. We are still in need of volunteers for the different committees. 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:
VPF 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 VPF member! Research Committee
Volunteers are needed in the research committee to post VPF 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@...
The VPF Membership committee is looking for a volunteer to contact people who email the VPF and invite them to join VPF or subscribe to the email group. Training and sample materials are available. Anyone who is comfortable with writing would be perfect for this task. If you can help with this activity, please contact the committee chairperson at: Cindy.Paris@... Public Relations Committee
The public relations committee is looking for volunteers to set up 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
The Fundraising committee is looking for volunteers who are enthusiastic and willing to help us achieve our goals. If you want to contribute to the VPF by donating a few of your hours per month on applying for funds and charities, please let us know. Send an email to Victoria Goldstein, currently head of the Fundraising Committee at Victoria.Goldstein@...
Did You Know .....
According to a recently published research study, velamentous cord insertion during pregnancy is prevalent enough to warrant ROUTINE screening by ultrasound. This recommendation is supported by the fact that velamentous cord insertion can lead to several obstetric complications, some of them associated with catastrophic outcome such as vasa previa. The study unequivocally stated that the use of color Doppler ultrasound should be the modality of choice to image the placental cord insertion during routine obstetric ultrasound.
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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 VPF 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 VPF directors. At this time there is no fee to join. If you would like to join VPF at the participating level, please send your request to info@...
- The 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. To join this group send an email to: Vasa_Previa-subscribe@yahoogroups.com
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P.O. Box 272293
Boca Raton, FL 33427-2293
VPF Website: http://www.vasaprevia.org
VPF Forum: http://www.vasaprevia.org/forum
VPF Chat Room: http://www.vasaprevia.org/coolcafe/login.asp
E-mail: Info@... .
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