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Newsletter International Vasa Previa Foundation Edition 1.

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  • Marlou & Robert
    Newsletter Dear parents, relatives or friends of Vasa Previa victims and survivors, This is our first newsletter regarding the International Vasa Previa
    Message 1 of 1 , May 6 3:47 AM
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          Newsletter

      Dear parents, relatives or friends of Vasa Previa victims and survivors,

      This is our first newsletter regarding the International Vasa Previa Foundation. The goal of this newsletter is to inform you all on the work we are doing for the Foundation and the work we are planning to do.
      This newsletter will not appear regularly, just when there is something new to tell you.

      First let me introduce ourselves:
      Amy Gaghagen, aunty of Joey (vasa previa victim, son of Kimi and Jason), president of the IVPF in North America.
      Marlou van Dijck, mother of Julia (vasa previa victim), president of the IVPF in Europe.

      You might have noticed that we´re pretty busy with the Foundation. These are the activities that we´re working on:

      Officializing the Foundation

      First, we are trying to get the Foundation officialised by contacting a notary/lawyer who will fill in the right papers we´ll need. This way we´ll be able to subscribe the Foundation at the Chambre of Commerce, which will make it possible to open a bank account to raise funds for our goal.
      When we´re official we´ll also be taken more seriously, which will probably get us more interviews and TV-shows which will spread the word about VP.
      Next tuesday the Dutch branch of the Foundation will be officialized thanks to a very kind notary in Wateringen (Holland) who has helped us for free.

      Website

      If you haven´t seen our website yet, please go take a look! http://www.vasaprevia.com
      Phil Millard, father of vasa previa victims Julia and Catherine, has managed to persuade a big hosting company to provide the IVPF with FREE domain and site hosting with CGI support (with pop3 mailboxes and stats etc a definite possibility) This means that we can get all the facilities we will ever need at no cost at all!! This is an excellent hosting company with many large clients.The new site gives us big possibilities in the future.
      Phil has build the buttons for the website and is always looking for improvements.
      He has also set up a forum
      http://www.vasaprevia.com/forum
      on this new website which we are testing at the moment.
      Since last friday the site also has a chatroom which can be accessed at the following link:
      http://www.vasaprevia.com/coolcafe/go.asp
      Phil has been putting a lot of effort in customizing the website so it will meet all our wishes. Comments on the chatroom and the forum are very welcome.
      Thank you so much Phil!

      Presskit

      Cara Kuhfal, the IVPF´s publicist, has been working on the presskit really hard. Unfortunately she had some major computerproblems which deleted half of her files.
      She is redoing some of the files now, and what Amy and Marlou have seen so far is absolutely wonderful. When the presskit is done we´ll be able to send it out to Television shows and possible sponsors. In the USA Cara will be responsible for contacting TV-shows to appear on them. She already has put some lines open to some TV-shows.
      Cara has also contacted publishers and authors to ask them to add vasa previa as a subject in pregnancy books.
      Keep up the good work Cara!

      Logo

      As an official Foundation, we´ll be needing a logo too of course. Susan Mulligan (mother of vasa previa survivor Claire) has asked her designer friend to help us develop a logo. Her friend has sketches now and will work to develop them more soon.
      We´re very anxious to see them, and we´ll keep you updated on the process. Thanks Susan, for intermediating!
      Until our new logo is ready, we will be using the beautiful Rainbow logo you can find above, created by Phil Millard.

      Goals

      As a foundation, we have some goals and means to achieve those goals.
      As you may have read on our website our goals are as follows:

      1. To educate the public and medical community about vasa previa.
      2. To adjust the medical rules and protocols worldwide in such a way that fatal outcomes due to vasa previa can be prevented.

      How are we trying to achieve those goals:
      -Supply information via the vasa previa website
      -Supply information via public media (newspapers, magazines, TV-shows)
      -Asking authors to adjust pregnancy books with info about VP
      -Contacting national and international obstetric organizations to have them adjust the medical protocols regarding VP
      -Contacting schools for midwifes and radiology to help them get better educated about VP.
      -Teaching OB- labor and delivery nurses in the hospital and on home deliveries about VP

      Future:

      -Continuing our current activities
      -Raising money to improve current education and/or develop specific educations regarding diagnosing VP.

      Achievements

      What have we achieved so far:

      -Marlou will be appearing on the Dutch televisionshow ´Gezondheidsplein´ (Healthplaza) on Tuesday May 8, 15.10-16.00 on Nederland 1, where she will inform the public about vasa previa.
      -The Dutch Women magazine `Margriet´ will soon publish an article about Julia´s delivery.
      -Marlou has been interviewed about vasa previa, Julia and the Foundation. The article will apear in a local paper (de Parel) in the Netherlands on May 7. A copy of this article will appear on our website soon.
      -The Dutch Association for Obstetricians and Gynaecologists (NVOG) has promised us that there will be a new Dutch protocol on bloodloss in the second semester of the pregnancy which will handle the subject vasa previa. We haven´t seen it though and are waiting for it to be ublished on the Internet.
      -The Dutch midwife association has promised us to investigate the knowledge of Dutch midwifes regarding VP and to investigate the current education they receive about VP.

      Please feel free to react on any subject in this newsletter, only not as a reply on this newsletter.
      Amy and Marlou can be reached at: info@...

      Much love to all of you,

      Amy Gaghagen and Marlou van Dijck

      Announcement for our Dutch members:

      Op maandag 7 mei verschijnt er een artikel over Vasa Previa, Julia en de Stichting in ´de Parel´, een huis-aan-huis weekblad dat verspreid wordt in het hele Westland. Het artikel zal ingescand worden en binnenkort op de website te zien zijn.

      Op dinsdag 8 mei, van 15.10-16.00 uur, Nederland 1, zal het programma gezondheidsplein aandacht besteden aan Vasa Previa middels een interview met Marlou van Dijck. Ze zal hierin tijdens een live uitzending zo duidelijk mogelijk proberen uit te leggen wat Vasa Previa is, wat de gevolgen kunnen zijn en hoe de stichting probeert de huidige gang van zaken te veranderen. Reacties op de uitzending zijn zeer welkom. Email: marlou@...

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