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Fall 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.
Spotlight on Sophie's Walk for Vasa Previa
The International Vasa Previa Foundation's most important fundraiser of the year took place on August 22, 2004 in more than 40 cities around the world! Volunteers from the IVPF, friends, and sponsors came together to walk in cities around the world. Totals from this year's walk are nearly $20,000, with more coming in!
There is still so much more to be done for this cause. Please consider organizing a Walk in your city next year! The Walk will take place on Saturday and Sunday, August 20 and 21, 2005. If you are interested in organizing a Walk, or just collecting donations and walking with your family and friends, please contact us at sophieswalk@.... Your efforts go a long way towards creating the awareness necessary to stop these senseless deaths. Click here to view pictures from this year's walk.
Research on Vasa Previa
The International Vasa Previa Foundation has been contacted by the Florida Institute for Fetal Diagnosis and Therapy in regards to an experimental in-utero laser surgery to correct type 2 vasa previa (multi-lobed placenta). The Florida Institute is starting an observational study assessing the potential risks and benefits of such a procedure. This technique is being performed worldwide. Over 400 such procedures have been performed for other conditions.
The potential benefits to women with type 2 vasa previa include:
a) the avoidance of sudden spontaneous rupture of the vessels leading to fetal/neonatal death,
b) the avoidance of prolonged hospitalization,
c) the avoidance of the need for obligatory cesarean section,
d) and potential delivery at term.
Depending on the extent of the succenturiate lobe and the size of the vascular anastomoses, patients may or may not be candidates for laser surgery. Those with type 1 vasa previa (velamentous cord insertion) are not suitable for this treatment.
a) the avoidance of sudden spontaneous rupture of the vessels leading to fetal/neonatal death,
b) the avoidance of prolonged hospitalization,
c) the avoidance of the need for obligatory cesarean section,
d) and potential delivery at term.
Depending on the extent of the succenturiate lobe and the size of the vascular anastomoses, patients may or may not be candidates for laser surgery. Those with type 1 vasa previa (velamentous cord insertion) are not suitable for this treatment.
The IVPF believes that it is important to observe the natural history of vasa previa of patients in which prenatal diagnosis is achieved, given that most do well with close observation and Cesarean by 35 weeks. There is also a possibility of complications from this procedure which include preterm delivery or harming the fetus from a significant placental infarction. However, there are a few circumstances when the procedure might be considered, such as a maternal history of very preterm delivery. Each case would have to be looked at on its own merit. If you have type 2 vasa previa and would like to investigate this procedure or would consider participating in this study, please contact info@... for more information.
IVPF Medical Advisory Board
The International Vasa Previa Foundation welcomes the following experts to its Medical Advisory Board: Waldo Sepulveda, MD; Dolores Pretorius, MD; Yinka Oyelese, MD; Jason Collins, MD; Val Catanzarite, MD; and Jason Birholz, MD. All are esteemed physicians and experts on vasa previa in the fields of obstetrics and/or ultrasonography. The IVPF is proud to be associated with these accomplished individuals and looks forward to working with them.
Other News
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IVPF has produced a document on vasa previa risk factors, testing, and management recommendations. These recommendations are based on the consolidated results of science, technology, and its experience with hundreds of vasa previa families. Click here to view this important document.
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The IVPF's highest award is the Humanitarian Service Award. Those who provide an invaluable service for the cause or who go far and beyond the call of duty earn this highest honor. Humanitarian Service Awards from the International Vasa Previa Foundation have been awarded to Eduardo Macadar, Jennifer Semore, Patricia Black, and Jeff Paris for their service during Sophie's Walk for Vasa Previa 2004. Last year Humanitarian Service Awards went to Kate Henry, Marlene Wubs, Sigrid de Rooij, Phil Millard, Rhonda Wolters, Syl Jung, Marlou van Dijck, Linda Ursillo, Kristy Schryver, Bea Saver, Tatiana Salcedo, Trina Perrone, Aimee Rye, Fred Rye, Lourdes Ramirez, Carol Prentice, Ivadell Peters, Cindy Paris, Patricia Drabant, Amy Gaghagen, Jacqueline Mullikin, Christie Michie, Meredith Kirby, Kiki Moretti, Jose Goldstein, Paula Gammons, Veronica Cardona, Alejandro Arango, Victoria Goldstein, and Yinka Oyelese MD. Thank you all for your valuable service!
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Teresa Spurgeon has taken on the important post of IVPF Assistant Secretary. She is a welcome addition to the IVPF staff!
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The Discover Heath Channel featured vasa previa on its Special Deliveries television show on 17 and 23 October 2004. It was a complicated case of vasa previa due to the location of the placenta in this case, but the outcome was excellent. The mother had been hospitalized for 10 weeks prior to delivery. IVPF is thrilled that Discovery Health Channel covered this little known, but deadly condition.
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IVPF is growing. There are currently 74 participating members, 272 receiving this newsletter, and 174 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.
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Holiday cards will be on sale once again, we have about 25 boxes left. Be sure to buy yours while you can and support the IVPF at the same time! Click here to make your purchase.
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 next monthly members' meeting will take place on Wednesday, 3 November 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 visit http://www.vasaprevia.org/contact/member.htm to request participating membership. -
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@...
Did You Know .....
That there is an inordinately high risk of vasa previa in in-vitro fertilization (IVF) pregnancies? In one study, the rate was 1:293. This is just one example of the less than welcoming intrauterine environment inherent in some pregnancies resulting from assisted reproductive technology.
That there is an inordinately high risk of vasa previa in in-vitro fertilization (IVF) pregnancies? In one study, the rate was 1:293. This is just one example of the less than welcoming intrauterine environment inherent in some pregnancies resulting from assisted reproductive technology.
Other Stuff
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There are two levels of membership open to the public. The first is general membership and simply subscribing 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 (voting) 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 visit http://www.vasaprevia.org/contact/member.htm to request participating membership.
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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. The IVPF Board of Directors, Amy Brown Gaghagen, Victoria Goldstein-Macadar, Cindy Paris, Debi Pederson, and Karen Peters 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
E-mail: Info@...
Links Mentioned in this Newsletter:
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IVPF Website
http://www.vasaprevia.org -
Risk Factors, Testing, and IVPF Management Recommendations for Vasa Previa
http://www.vasaprevia.org/education/recommendations.htm -
Sophie's Walk for Vasa Previa 2004 photos
http://www.vasaprevia.org/walk/locations.htm -
Newsletter Email Group
http://groups.yahoo.com/group/IVPF -
IVPF Store
http://www.vasaprevia.org/store -
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 -
Request Participating (voting) Membership in the IVPF!
http://www.vasaprevia.org/contact/member.htm
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