Summer 2006 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.

BIG NEWS! 

The American College of Obstetricians and Gynecologists (ACOG) has published management recommendations for vasa previa in its expert series on continuing education.  The article, entitled "Placenta Previa, Placenta Accreta, and Vasa Previa" was published in the April 2006 edition of their prestigious Green Journal.  It was authored by Yinka Oyelese, MD and John Smulian, MD MPH.  This much needed statement reiterates IVPF recommendations for awareness, testing, and management.  Because ACOG is instrumental in the development of a standard of care for obstetrical and gynecological conditions, the publication of this article is one of the last steps on the road to a standard of care for management of vasa previa.


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 September 30-October 1st, 2006 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 $24,000.  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

• CHC Payroll Deduction Donations
  The IVPF has been accepted as a member agency of the Community Health Charities of Kansas and Missouri (CHC),  It is hoped that in future years our participation with this organization will extend to the national Combined Federal Campaign in the USA.  The CHC raises funds on behalf of its member charities through workplace payroll deduction campaigns in a similar fashion to the well known United Way and Combined Federal Campaigns.  If you know anyone employed in Missouri or Kansas, please ask them to consider listing the International Vasa Previa Foundation as one of their charities when the workplace campaign begins this fall.  If their employer doesn't use the CHC, have them contact us for information their employer will need to add the CHC to their charitable payroll deduction program.  We hope this program produces a steady supply of income to enable us to continue additional mailing campaigns, expand IVPF attendance at medical conferences, and most of all to continue sponsoring medical educational programs such as the hospital grand rounds program that is beginning to take off.  These programs cost quite a bit of money to fund. 
  
• IVPF Store
  • 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. 
  

• 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 Vancouver, Canada September  200
  • Friends of Missouri Midwives (FoMM) Women's Expo, St. Louis, MO  October 200
  • Fetal Medicine Foundation of America OBGYN Ultrasound Meeting, Ft. Lauderdale, FL November 200
  • Society of Maternal Fetal Medicine (SMFM)  Miami, FL  February 200
  • American Institute of Ultrasound in Medicine (AIUM), Washington, D.C.  May 200
  • Wycombe General Hospital  London, England  May 200
  • 5th World Congress in Fetal Medicine – Barcelona, Spain June  200
  • National Childbirth Trust (NCT) Conference -- England July 200
  • Challenges in Antenatal Screening and Pregnancy Care – London, England  July 200
  • International Society of Ultrasound in OBGYN (ISUOG) 16th World Congress London, England September  2006
  • Fetal Medicine Foundation of America – Ft. Lauderdale, FL  December 2006
    
• IVPF Mailing
  The IVPF has worked hard for more than a year to put together a mailing to hospitals.  In June 2006 5,500 mailing pieces went out to hospitals in the USA, Canada, Australia, and fetal medicine specialists in 30 countries throughout the world.  The mailing piece included  the IVPF statement of risk factors, testing and management; the Green Journal article on the study that so many IVPF members participated in that was published in May 2004 by the prestigious American College of Obstetrics and Gynecolgy (ACOG) entitled "Vasa Previa: The Impact of Prenatal Diagnosis on Outcomes"; a list of scientific resources on vasa previa; bookmarks; brochures; and a letter from Amy Brown Gaghagen, President of IVPF offering assistance and materials in organizing educational presentations at these hospitals.  This mailing has been highly successful!
  
• Educational Medical Programs
  As a direct result of the mailing, 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 our Medical Advisory Board (MAB) has agreed to do as many of them as he can.  We have had requests from as far away as Australia.  A big thank you 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.

• New IVPF Vice President
  A big welcome to Phil Millard, IVPF's new Vice President!  Phil is a founding member of the IVPF, having been involved in the organization from its inception.  He was instrumental in our website development and continues to volunteer his expertise in all technical areas.
  
• New IVPF Assistant Secretary
  Jeannette Schwartz, mother of vasa previa miracle baby Aiden, joined our staff as Assistant Secretary this year.  Her efforts have been invaluable to the organization in many areas. 
  
• New Education Committee Chairpersons
  Daren and Natalie Samat, parents of vasa previa angel Henry, have taken on the role of Education Committee chairpersons.  While we grieve the loss of their precious son, we also welcome their dedication and energies!  They have been instrumental in expanding our role in the UK and other areas.
  
• 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 Josh and Carly Vester for outstanding educational school projects on vasa previa, and to Jeannette Schwartz, our new IVPF Assistant Secretary, for dedicated service. 
  
• Sophie's Website 
  A website honoring Sophie Isabelle Macadar (of Sophie's Walk fame) has been added to the IVPF website.  Read about this precious angel and how she's changing vasa previa awareness all over the world!  http://SophiesWalk.org/sophie  
  
• IVPF is growing
  There are currently 105 participating members, 237 receiving this newsletter, and 229 Vasa_Previa email group subscribers.
  
• New IVPF Chat Service
  The IVPF has a new chat service kindly donated by SigmaChat.com  The chat room is open to everyone who would like to talk about vasa previa and their experiences.  Contact Cindy.Paris@... if you would like to volunteer to host a regular open chat time.  The IVPF chat room is located at http://IVPF.org/chat
  
• 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.  The next monthly members' meetings will take place on Wednesday, 2 August at 1:00am GMT (7pm CST) and Wednesday, 6 September at 7:00pm GMT (1pm CST).  
  
• 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:
  • 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!
  • Nominating Committee
    This committee is still in need of additional volunteers.  Typically the committee meets online once per year in the early fall to nominate directors for the IVPF.  It meets on an as-needed basis at other times of the year to fill empty positions.  Contact Cindy.Paris@... to volunteer.
  • 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@...  
  • Research Committee
    We are looking for 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@... if you can help with this.

• 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 the 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