ASAP Steering Team Update – July 2013

Winston Churchill once said “Never, never, never ever give up.” 

No truer words can be said for the determination of those that have been impacted by stillbirth whether they be parents, families or friends and acquaintances.  We know all to well that tragically  the lives of too many precious babies are lost each and every day.  And yet these children have no voice unless we step up collectively to speak for them. 
 
The ASAP Coalition was founded because we know that individual voices, no matter how loud they are, when talking all at once are impossible to understand.  But – when we gather together and shout in unison from the same mountain top we can and we will be heard and we will make a difference.  The Coalition is not about duplicating anyone’s individual efforts but making sure that the world knows about them and joining forces to raise the volume on the issues that are so very important to us all.
 
The ASAP Coalition Steering Team has been busy behind the scenes working on a number of projects and it is way past time to give you an update.  We apologize for the length of this newsletter and pledge to have regular and timely updates going forward!  Please let us hear from you if you would like to be more deeply involved in anything going on.
 
Stillbirth Legislative efforts
  • We are watching the various pieces of legislation that have been introduced into Congress as well as some that are appearing before state legislators.  Our belief is that ANY piece of legislation that will impact stillbirth issues in a positive way is a good piece of legislation.  Passing legislation on a state or national level takes great insight to how the process works and strong determination to encourage legislators to support the issues.  Keep an eye on the ASAP Coalition website for legislative issues as they happen and lend your support to these bills.

  • Speaking of legislation – we are so proud of ASAP Member and co-founder, Debbie Haine Vijayvergiya for pushing legislation in New Jersey in memory of her daughter Autumn Joy.  This legislation was UNAMINOUSLY approved in record time and will go to the Assembly before crossing the Governor’s desk for signature.  We believe this legislation could be replicated in other states!  If you are interested in pursuing such an endeavor – contact Debbie at Debbie@dlh-associates.com. Read the full text of The Autumn Joy Stillbirth Research and Dignity Act here.

Stillbirth Prevention efforts –

  • In February Marian Sokol and Lindsey Wimmer presented a proposal on behalf of the ASAP Coalition to the Members of the Coordinating Commimttee for the National Child and Maternal Health Education (NCMHEP) to carefully study the statistics, impact and potential of addressing stillbirth as the focal point of the next multi-year campaign.  This is the organization that has led a successful campaign the last few years regarding elective preterm deliveries.  While the ASAP Coalition was not chosen as their focus for their next multi-year campaign we consider it to be a success as we were able to bring the issues to light before an impressive groups of individuals comprising the committee including approxixmately 30 health provider associations, nonprofit organizations, and federal agencies. Read the full proposal submitted to NMHEP
  • Steering Team members have held a number of conversations with various organizations and agencies over the past months.  As a result of these discussions a letter has been sent by First Candle on behalf of the ASAP Coalition with a specific request that NICHD convene an Interagency Consensus Working Group to bring together representatives from federal agencies, along with key parent group advocates, ACOG, SMFM, AAP, AAFM and selected scientists to define the State of the Science and the Issues.  This letter has been graciously acknowledged but we have not received a formal reply to this request.
  • The ASAP Coalition is supporting a number of current stillbirth research projects including the STARS Study.  Learn more.  Can you help us promote enrollment in the STARS Study by placing the logo/link on your website or including information in your newsletter?  If so, please let us hear from you: info@starlegacyfoundation.org

AWARENESS –

  • In 2009 SANDS of the United Kingdom launced their Why 17 Project to spell out clearly the issues surrounding stillbirth in the UK.  This document was disseminated to Parliment and has been a catalyst for change.  The ASAP Coalition discussed this document and the noted need for a similar publication that would focus on the various and complex issues surrounding stillbirth in the United States.  While the issues in the US share many commonalities with the UK and the rest of the world there are also a number of issues unique to the US.  As a result the ASAP Coalition is in the process of authoring this yet unnamed document in consultation with various experts from around the US and the world.  It will take some time to complete but we are hopeful that a look at the big picture will be a catalyst for change in the US as well.  By no means does the ASAP Coaliltion intend to tackle each and every issue identified but we believe a single compilation of the issues will help to further individual efforts surrounding stillbirth awareness & prevention.  If you would like to be involved in this effort contact lindsey@starlegacyfoundation.org.
  • The ASAP Coalition was represented at the recent PLIDA Conference in Minneapolis.  Information about the Coalition was provided to the 300 attendees and we experienced a jump in our membership as a result.  Information was also provided to attendees on current legislation and research studies.
  • The ASAP Coalition has enthusiastically supported the efforts of two awareness projects currently underway – the RETURN TO ZERO movie as well as the STILL Project.  Although both are video projects the RTZ movie is a dramatization of the experience of one couple experiencing a stillbirth and all of the complexities that follow.  The STILL Project is being created as a documentary project to bring awareness to various individual stillbirth issues.

MEMBERSHIP DEVELOPMENT & RETENTION –

  • The ASAP Coalition currently has over 800 individual, health projessional, organization, group and publication members and the list grows each day.  Help us expand our reach to raise stillbirth awareness and prevention efforts!  Invite your colleagues, friends, families and anyone who will link arms with us to turn up the volume and bring stillbirth out of the shadows!
  • As you know, the ASAP Coalition is not about recreating or duplicating any efforts of our members – but rather to support all those efforts and make sure everyone knows what is all going on!  In doing so, we can all speak with one voice when it is important and yet carry out our own individual important missions.
  • The Coalition has developed a STILLBIRTH HERO Award program and will recognize members each quarter representing individuals, groups, publications and health professionals who have been nominated and chosen by the membership for extraordinary efforts!  Our first quarter honorees were Cathi Lammert of National SHARE and Jonathan and Carrie Pasqual of the STILL Project.  Read more here.  If you know of someone who is deserving of this recognition be sure to submit a nomination here.  Second quarter nominations will be announced soon.

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Let us not be content to wait and see what will happen, but give us the determination to make the right things happen.

– Horace Mann

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