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Fall 2003 Newsletter
VPF Holiday Cards are now available on our website. Click here to see a preview.
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
Phase one of our research project has been completed. The data has been analyzed and is being submitted in October to one of the most prestigious OB journals. In addition, Dr. Oyelese's paper on vasa previa management has not only been accepted for publication by Contemporary OBGYN (circulation 40,000), but will be the cover article for the November 2003 issue http://www.contemporaryobgyn.net/be_core/g/index.jsp. Links to the article on vasa previa management article will be made available to the group as soon as the article is published.
As we originally suspected, our data proves beyond a doubt that prenatal diagnosis is the only assurance of survival for vasa previa babies. Diagnosing vasa previa prenatally WILL become the standard of care. 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.
Additionally, several other papers on vasa previa have been published recently in top medical journals, bringing even more attention to this issue. Some of the papers include:
- Prenatal detection of velamentous insertion of the umbilical cord: a prospective color Doppler ultrasound study
Fetal Medicine Center, Department of Obstetrics and Gynecology, Clinica Las Condes, Santiago, Chile (Feb 2003)
W. Sepulveda *, I. Rojas, J. A. Robert, C. Schnapp, J. L. Alcalde - Fetal Exsanguination from Ruptured vasa previa: still a catastrophic event in modern obstetrics, has been published in the Sept issue of Journal of Obstetrics and Gyneacology in UK. (September 2003)
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Letter to the Editor submitted by Dr. Oyelese to the Journal of Ultrasound in OBGYN
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Paper on MRI to detect vasa previa by Dr. Oyelese to be published in the British Journal of OBGYN
Spotlight on Sophie's Walk for Vasa Previa 2003
Boca Raton, FL Mexico City, MX Cleveland, OH The Hague, Netherlands
The Vasa Previa Foundation's most important fundraiser of the year took place around the world on August 24, 2003. Volunteers from the VPF, friends, and sponsors came together to organize the Walk in cities around the world. During 24 hours, someone, somewhere walked for this cause! Final tally of the Walk is as follows:
More than 500 people walked around the world, raising funds for and awareness of vasa previa. To date, the 2003 Walk has raised almost $25,000! Thank you to all the volunteers, friends, donors and sponsors who made this possible.
Anchorage, AK; Ankeny, IA; Atlanta, GA; Austin, TX; Aventura, FL; Boca Raton, FL; Boston, MA; Cleveland, OH; Dallas, TX; Del Mar, CA; Greenville, SC; Kent, WA; Washington D.C.; Larchmont, NY; Liverpool, NY; McLean, VA; Moline, IL; Pensacola, FL; Pittsburgh, PA; Saint Louis, MO; State College, PA; Tucson, AZ; Ferny Creek, AUSTRALIA; The Hague, NETHERLANDS; La Paz, BOLIVIA; Lanarkshire, SCOTLAND; Mexico City, MEXICO; Montevideo, URUGUAY; Rio de Janeiro, BRAZIL; San Pedro Sula, HONDURAS; Santiago, CHILE; and Toronto, CANADA.
Please consider organizing a Walk in your city in 2004! The Walk will take place on Sunday, August 22, 2004. If you are interested in organizing a Walk, please contact us immediately at sophieswalk@.... And don't forget to visit the Vasa Previa Foundation website, http://www.vasaprevia.org/walk to see more pictures of the 2003 Walk!
- After reading the article in the Dallas Morning News, Kate, age 13, contacted the VPF and offered to help raise funds and awareness of vasa previa. She organized a lemonade stand on September 27th to raise funds for the VPF. She raised $120 and has asked her school to adopt the VPF as their official charity! Christie Michie and Kristy Schryver spent the day with Kate and presented her with the VPF Humanitarian Service Award. Way to go Kate!!!
- VPF Holiday Cards are now available on our website. Click here to see a preview. The VPF is selling the cards for $20 (20 cards). Please place your orders at the new VPF Store. Orders will be shipped within two days of being received.
- 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 September there are 58 participating members of VPF, 305 subscribers in the newsletter group, and 142 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. The next meeting will take place on Wednesday, 5 November 2003 at 19:00 GMT (1pm CST). Reminder notices will be sent out through the Newsletter email group.
Stories 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:
- Membership Committee
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@...
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@...
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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 Please be prepared to briefly explain your vasa previa story before we approve your subscription to this group.
- VPF Executive Meeting Minutes are available online to any member of the IVPF email (newsletter) group. To become a member of the group, send an email to IVPF-subscribe@yahoogroups.com The meeting minutes can be found at http://groups.yahoo.com/group/IVPF/files/
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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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