It only takes a moment to diagnose life...

 

Summer 2007 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 adjust 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.

BIG NEWS! 

 

·       New Vasa Previa Presentation Makes Its’ Debut!
The Sixth World Congress in Fetal Medicine of the Fetal Medicine Foundation was held in Cavtat, Croatia on 17-21 June, 2007.  The International Vasa Previa Foundation was represented with a lovely booth staffed by our President, Amy Brown Gaghagen, USA; our Vice President, Mike Krznaric, Canada; and our Co-Chairpersons of the Education Committee, Natalie and Daren Samat, UK in conjunction with the UK Vasa Previa Awareness Group.  Kudos and our deepest appreciation goes to Professor Phillipe Jeanty, MD, USA who has recently created the world’s most comprehensive presentation on vasa previa to date.  As a direct result from interaction with the Samats’, Professor Phillipe Jeanty, MD, created and presented his lecture on vasa previa at this event.  It was well received by a packed room, and preliminary results of an informal survey indicated that a portion of the attendees had not been looking for cord insertion, but that the vast majority would be checking this in the future.   Many of the delegates who visited the IVPF booth showed great interest in receiving and presenting Dr. Jeanty's lecture, with a number of them offering to translate it into their native language to be offered online.  This conference was definitely a successful and worthy event with many new contacts having been made and more powerful connections underway.

·       New Standards for VP Coming to the UK!
Kudos to our own IVPF Education Committee chairperson, Daren Samat, who successfully made contact with the Sunday Times in London.  Daren and Natalie Samat and several other members of the IVPF as well as members of the IVPF Medical Advisory Committee were interviewed for a two part story that ran in the UK. Subsequently, the stories were picked up by BBC TV and Radio and other publications as well as TV show. Full media links and info available online at http://IVPF.org/pressroom/inthenews.htm  Thanks to the UK stories, the Royal College of Obstetricians and Gynecologists (RCOG) has agreed to change their policy for detecting vasa previa in the UK, stating that women with risk factors will be scanned for vasa previa at the 20 week ultrasound!

 

·        IVPF Hits the Media

o       Running off of the UK media success, press releases were created to be used worldwide with the media. Releases have been used in Canada, Australia, and the USA for distribution those countries. Thanks to Kristen Lewis for follow up phone calls in the USA.

o       IVPF Vice President, Mike Krznaric, has made successful contact with the media in Canada resulting in several excellent TV, radio, and newspaper interviews. Full media links and info available online at http://IVPF.org/pressroom/inthenews.htm

·       Oprah Winfrey Campaign
More than 500 letters were submitted to the Oprah Winfrey show requesting that they do a special on vasa previa.  We are still pursuing the producers to try to get into the show.  Thank you to everyone who wrote letters.

Spotlight on Sophie's Walk for Vasa Previa

The International Vasa Previa Foundation's most important fundraiser of the year will take place the weekend of October 6^th and 7th, 2007 in more than 50 cities around the world!  Organization of this year's walk is well under way.  Volunteers from the IVPF, friends, and sponsors will come together to walk in cities around the world.  Totals from last year's walk were $22,065.00.  This year’s goal is $50,000. 
 
Please consider organizing a Walk in your city this year!  Its not difficult.  Many of our walks started out as small private walks.  It can be as simple as a trip to the park and a picnic.  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 eliminating infant death from this heartbreaking condition.  But we need your help.  Click here to view pictures from last year's walk.  Vasa previa is one tragedy we CAN do something about!  Please support IVPF by walking with us or sponsoring a walker. For more information, go to http://SophiesWalk.org/walk  

Other Fundraising Opportunities

• Baby Giles Special Fundraiser: Help a VP Family in Need!
  IVPF has learned of a family that needs our help right away.  Upon recently relocating to Canada, Avital was diagnosed with vasa previa.  IVPF guidelines were followed, resulting in the healthy birth of baby Mika on June 20th at 33 weeks by emergency C-section.  Mika spent less than 3 weeks in Intensive Care but is now home and doing well.  Due to not meeting the residency requirements at the time of diagnosis and hospitalization, the Giles family does not qualify for the national Canadian health coverage for this birth, which has resulted in medical expenses of $13,000CAD.  This $13,000 hospital bill will be a terrible hardship for this family.
  
  Although your generosity makes it possible for the IVPF to attend medical conferences, and perform other important activities that raise awareness about vasa previa, resulting in prenatal diagnosis and the good management that Avital has received, we simply do not have the resources to make donations to individual families.  So we are asking you to consider donating specifically to the Baby Giles Special Fundraiser.  All funds received through this particular fundraiser will go directly to baby Mika and Avital Giles' medical expenses.  We are certain that our 500+ general and participating membership can make a big dent in the cost of Avital's hospitalization and delivery.  Whatever you can give will be a big help.
  
  We also need people to locate items that can be auctioned off on eBay for this special fundraiser.  If you have items you can donate or are willing to help with the eBay auction, please contact info@...
  
  A special IVPF fund has been set up to help this family.  To make your donation via PayPal click here:  Baby Giles Special Fundraiser or send your donation to:
  IVPF
  P.O. Box 272293
  Boca Raton, FL   33427-2293
  USA
  If you send a check, please mark it "Baby Giles Special Fundraiser" and include your name and address. 
  
• Escrip Program - Give while you shop at no cost to you!
  eScrip merchants are all over the USA.  When you register one of your debit or credit cards with eScrip and assign the IVPF as your charity, all purchases made at participating stores earn the IVPF a donation.  Better yet - apply for an eScrip Visa card and every purchase anywhere will earn a donation to the IVPF - at absolutely no cost to you.  Purchases made with an eScrip credit card at a participating merchant earn the IVPF both the store's donation and the Visa donation.  This is a very important program for the IVPF and very easy to use.  We sure hope you register your cards with eScrip today!
• Participation in the Workplace Giving Programs
  This is another big way you can help!  IVPF participates in the Community Health Charities of Kansas and Missouri Workplace Giving program as a member agency in the St. Louis area in the USA.  Employers around the USA participate in WorkPlace Giving.  Please ask your employer to add the IVPF to existing programs.  Many employers will even match your monthly donation!
• Available in the IVPF Store:
  • NEW!  ~ Artwork 
    Lydia McEvoy has generously decided to donate a portion of sales of her beautiful and inspired artwork to the IVPF.  For the next 6 months sales of her artwork will benefit the Baby Giles Special Fundraiser.  After that, donations received from Lydia’s sales will benefit the IVPF at large.  Please see and purchase Lydia’s work at http://IVPF.org/store/McEvoy.html  Items are customizable too
  • Lucas' Legacy Angels
    This is one of the few places where you can find the very special Lucas' Legacy Angel pins.  Lucas' Legacy Angel pins are lovingly created by Jennifer Fredrick.  One of her biggest fear's after losing Lucas was that he would be forgotten.  Jen didn't know what she would do or how she would do it but she knew she would come up with something to keep his memory alive.  So she makes these gorgeous Lucas' Legacy Angel pins, packages them with poems about infant loss, and either gives them away or donates them to people who are in need of a little extra comfort.  The IVPF is honored to be part of Lucas' Legacy.
  • Victoria's Secrets
    Another exciting addition to the store is Victoria's Secrets, a handwritten cookbook produced by Sophie's own mother, Victoria Goldstein-Macadar.  Victoria donates these cookbooks to the IVPF at a discount to further vasa previa education, awareness, and research.  Visit the store here:  http://IVPF.org/store   Other items available include holiday cards, IVPF pens, IVPF wristbands, and denim shirts.
  • Stork Avenue
    Need some birth announcements or thank you notes?  The IVPF is affiliated with Stork Avenue.  Be sure to visit their site for your baby's announcements and support the IVPF at the same time
    
• Donate Your Car to the IVPF
  Have a car to donate?  IVPF accepts vehicle donations through CarProgram.com.  Car Program handles everything, including pick-up, and your donation is tax deductible.  Click here for a vehicle donation form.
• PayPal Donations
  The IVPF greatly appreciates your kind donations.  We accept credit card donations through PayPal or you can send your donation to:  IVPF, P.O. Box 272293, Boca Raton, FL   33427-2293, USA.  Click here to donate to IVPF with PayPal. Its fast, easy and secure.  Your donation is tax deductible.  In addition, many employers will match your donation.  Contact your employer for more information on matching donations.  The International Vasa Previa Foundation is an all volunteer, non-profit, tax-exempt 501(c)(3) charitable organization. 

 

Education

·        Medical Conferences:  The International Vasa Previa Foundation participates in many important medical conferences each year.  We have been or will be present with booths and/or presentations at the following events during the past year.  Additionally, the IVPF sends materials for distribution to similar events that we are not able to attend.

• International Society of Ultrasound in OBGYN (ISUOG) 16th World Congress London, England
• Fetal Medicine Foundation of America OBGYN Ultrasound Meeting, Ft. Lauderdale, FL
• Perinatal Society of Australia and New Zealand's (PSANZ) 11th Annual Conference Melbourne
• 15th Annual Symposium New Developments in Prenatal Diagnosis and Medical Genetics, Canada
• "Diagnosis and Management of Vasa Praevia", Newcastle Obstetrical and Gynaecological Society, Australia
• 6th World Congress in Fetal Medicine 2007, Cavtat, Croatia
• International Society of Ultrasound in Obstetrics and Gynecology (ISUOG) 17th World Congress, Florence, Italy

·       Educational Medical Programs:  As a direct result of the last year’s mailing to hospitals and fetal medicine specialists around the world, several dozen have requested more information from the IVPF, many of them requests for educational programs.  Dr. Yinka Oyelese, one of the foremost experts on vasa previa and a member of the IVPF Medical Advisory Board has agreed to do as many of them as he can.  We have had requests from as far away as Australia.  A big thanks goes to Jenna Steckler for developing an IVPF Grand Rounds Set Up Guide to aid volunteers in setting up these events.  Her hard work and expertise in this project has streamlined the process of setting up much needed professional educational programs.

Other News

• New IVPF Vice President
  A big welcome to Mike Krznaric, IVPF's new Vice President!  Mike is a new member of the IVPF but has been extremely active since the untimely death of his daughter Katarina to undiagnosed vasa previa last year.  He has volunteered his expertise in all technical areas, works with his local media, and has attended conferences in Canada and Croatia, generously donating his travel expenses to the cause.  
•  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. 
•  Humanitarian Service Award
  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 recently been awarded to Daren Samat and Natasha Donnolley for service above and beyond the call of duty.
• IVPF is growing
  There are currently 140 participating members, 303 receiving this newsletter, and 365 Vasa_Previa email group subscribers.
• IVPF members' meetings
  IVPF members' meetings take place 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 IVPF newsletter email group.
• Your Stories
  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.  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:
  • Sophie’s Walk Captains
    Walk captains organize and host local walks in their area.  This can be as simple as taking a walk in the park with friends or as large and involved as you like.  Sophie’s Walk is our biggest fundraiser and brings in the necessary funds to create awareness about vasa previa.  Please contact SophiesWalk@... if you can host a walk in your town.
  • Sophie’s Walk Coordinators
    Sophie’s Walk desperately needs a couple of new volunteers to coordinate the walks, train and organize the walk captains, and make certain they get the materials necessary, most of which are already online.  PLEASE consider helping with this!  It is a big job, but not an unmanageable one. It is part time only, and is done and over within a couple of months.  Without new coordinators, Sophie’s Walk will be a thing of the past, and with it, a large portion of IVPF operating funds.
  • Participating Members
    IVPF needs participating members to help run the organization through committee work and by voting on important issues. Membership is free.  Please visit http://IVPF.org/contact/member.htm to request participating membership.
  • Education Committee
    We are in need of volunteers that can help staff IVPF booths at medical and ultrasound conferences.  Please contact Education@... if you are able to help in this area.  If you don't contact us, we will be contacting you when an event in your area is scheduled.  We hope you can join us in this important task!
  • Public Relations Committee
    The Public Relations Committee is looking for 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 a third recognized type of vasa previa resulting from placenta membranacea. The 2 main causes of vasa previa are velamentous cord insertion and vessels crossing between lobes of the placenta such as in succenturiate or bilobated placentas. Less commonly, a vessel that courses over the edge of a marginal placenta or a placenta previa may become a vasa previa after the placenta remodels its way upwards in the uterus (trophotropism).

 
Erratum:

• IVPF Membership
  There are two levels of IVPF 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.  Committee volunteers are required to be participating (voting) members.  If you would like to join IVPF at the participating level, please visit http://IVPF.org/contact/member.htm to request participating membership.
• Vasa_Previa Email Group
  The IVPF sponsors an email discussion group.  It is called Vasa_Previa and is open to anyone who's experienced vasa previa in any way.  Subscribers discuss their experiences and offer information and support to bereaved parents and to prenatally diagnosed subscribers who are still expecting.  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.
• IVPF Executive Committee Meeting Minutes
  See for yourself what the IVPF is up to!  IVPF Executive Meeting Minutes are available online at http://IVPF.org/minutes

 

^i^

Feel free to contact us about any subject in this newsletter.  The IVPF Board of Directors, Amy Brown Gaghagen, Victoria Goldstein-Macadar, Cindy Paris, Daren Samat, Debi Pederson, Meredith Kirby, and Karen Peters can be reached at Info@...

IVPF
P.O. Box 272293
Boca Raton, FL 33427-2293
Website: IVPF.org  E-mail:info@...
Phone and Fax: 267-790-6693

Links Mentioned in this Newsletter:

• Special Baby Giles Fundraiser
  https://www.paypal.com/cgi-bin/webscr?cmd=_xclick&business=donations@...&item_name=Special Fundraiser for Baby Giles&no_shipping=1&return=http://IVPF.org/thanksGilles.htm&cancel_return=http://IVPF.org
• Sophie's Walk for Vasa Previa
  http://SophiesWalk.org/walk/
• eScrip – Give while you shop at no cost to you!
  http://www.escrip.com/program/3ways/index.jsp
• IVPF Fundraising
  http://IVPF.org/fundraising
• Risk Factors, Testing, and IVPF Management Recommendations for Vasa Previa
  http://IVPF.org/education/recommendations.htm
• Vasa Previa Presentation by Professor Phillipe Jeanty, MD
  http://www.thefetus.net/link.php?id=2182
• Medical Resources on Vasa Previa
  http://IVPF.org/resources/resources.htm
• Vasa Previa Stories
  http://IVPF.org/stories/personal.htm
• IVPF Store
  http://IVPF.org/store
• IVPF Car Donation Program
  http://ivpf.org/fundraising/
  http://ivpf.org/fundraising/VehicleForm.PDF
• Stork Avenue
  http://www.storkavenue.com/index.html?id=993366
• IVPF Committee Assignments and Descriptions
  http://IVPF.org/Docs/IVPFcommittees.PDF
• Newsletter Email Group
  http://groups.yahoo.com/group/IVPF
• Vasa_Previa email discussion group
  http://groups.yahoo.com/group/Vasa_Previa
• IVPF Executive Meeting Minutes
  http://IVPF.org/minutes/
• Request Participating (voting) Membership in the IVPF!
  http://IVPF.org/contact/member.htm