A Swedish “FOP angel”

Posted by Karen - October 16th, 2011

Posted by Karen

Marie Hallbert lives in Sweden with her husband and 2 children.  Her younger son, Hugo, is age 13 and has Fibrodysplasia Ossificans Progressiva.  Marie has done so very, VERY much to help families dealing with FOP, and I’m privileged to say that she’s my friend.  One of the many parents she’s supported over the years gave her the name which is the title of this blog.  I really want to tell you about Marie, and especially her latest accomplishment…

First, a bit of background.  Marie’s son Hugo was diagnosed with FOP at almost exactly the same age as my daughter Miranda – just over age 2.  Marie found that because FOP is so very rare, when she tried to find out information about it, everything she read was in English.  While she does speak English, it’s not her first language, and she found herself really wishing that she had some Swedish FOP resources.  Marie says she became accustomed to dealing with FOP concerns entirely in English, so when she finally met an adult Swede who has FOP, she felt very wierd to be discussing FOP in Swedish.  ;-)

Because of her early experiences, Marie really wanted to make a difference for Swedish FOP families.  As such, she founded “FOP Sverige”, an FOP group for Swedes and other Scandinavians.  Marie has done all kinds of things with FOP Sverige, including arranging Scandinavian FOP conferences (more than 1!), doing fundraising, and helping Scandinavians with FOP obtain medical and rehabilitation help from a system which knows nothing about FOP.  Marie has also made it her mission to raise awareness of FOP in Sweden, giving talks to nursing student groups, the media, doctors and others.  I think it’s probably a testament to her hard work that out of 22 million people in Scandinavia, 22 people with FOP have been identified – that’s 1 per million, considerably more than the internationally recognized rate of 1 in 1.6 to 2 million.  (Which also makes me wonder if the rate might actually be higher elsewhere, too…  Food for thought.)

Another extremely valuable thing Marie has done is to be an important first contact and emotional support for Swedish and other families newly dealing with FOP.  Marie has helped many new FOP parents this way.  Interestingly, I’ve noted that in recent times, she’s becoming a bit of a “go to” person for families with new FOP diagnoses all over Europe.  For instance, Marie recently introduced me to a new FOP mom from an East European country – the woman had somehow been referred to Marie, and Marie in turn introduced her to others in the FOP community.

Most recently, Marie took a year off from her work as a hairdresser in order to focus on helping Hugo and further developing FOP Sverige.  In particular, Marie upgraded the FOP Sverige website (www.fopsverige.se) to contain much more information and resources.  One of the new things she’s done is to put a picture of the characteristic FOP toes front and centre on the first page of the website, the toes being the first clue in identifying FOP (trivia – the toes belong to our friend Erin McCloskey, the Erin of our own website).  Marie also did a great deal of hard work to translate English FOP medical resources in to Swedish, so that Swedes could have FOP information in their own language.   I have no doubt that Marie’s work in this regard will be invaluable to Swedes.  Finally, Marie incorporated her own FOP-themed blog into the website.

Yes, the FOP Sverige website is of course in Swedish.  However, conveniently, Marie has put a link to “Google Translate” along the right hand side of her web front page, so anyone can read it in English (or presumably other languages).

On top of all this, Marie is very nice, fun and down to earth.  I met her at an FOP mothers’ retreat a couple of years ago, and I really liked her.  I feel that Marie and I have a great connection.

Oh, and did I mention that Marie is also drop dead gorgeous?  One of her non-FOP accomplishments is work as a model from time to time.  Of course, Marie’s looks are by far the least important thing about her, but worth a mention.  :-)

Marie and I sharing a laugh with Dr. Kaplan in June 2009 at the FOP Mothers' Retreat tour of the UPenn FOP Lab.

Congratulations to my friend Marie Hallbert on her new website, for work very well done.

Me and Marie.

2 Responses to “A Swedish “FOP angel””

  1. helen munro says:

    Great blog, Karen and Marie, congratulations on the wonderful work you do! Yay, Sweden!

  2. Thank you Karen ;)
    Love *)(* Marie

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