Fibrodysplasia Ossificans Progressiva FOP | ACVR1(c.617G>A; R206H)
Marie-H.Fahlberg

2012 Jennie Peeper IFOPA Awards

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Oj!… Idag ringde telefonen och det var en faslig massa siffror, det var Jennie Peeper grundare och President för den Internationella FOP organisationen IFOPA som ringde från USA och berättade att dom hade utsett mig till 2012 års vinnare av Outstanding International Leadership Award. TACK!!! Och som vanligt rinner tårarna jag blir så otroligt rörd och väldigt, väldigt glad och stolt över det här.

Varje år delas priser i fyra olika kategorier ut i år gick priserna till;

Nick Bogard. President’s Lifetime Achievement Award
Christine Flexer. Outstanding Community Involvement Award
Stephanie Snow. Emerging Leader Award
Marie Hallbert. Outstanding International Leadership Award

WOW STORT!!! 😉

Outstanding International Leadership Award
Marie Hallbert
Marie’s son Hugo Fahlberg, who is now a young teenager, was diagnosed with FOP at age 2. When Hugo was diagnosed, Marie noted that there were no resources about FOP in their home country of Sweden, and certainly no Swedish language information. Marie set about to change that. She is the founder of ”FOP Sverige”, a group which provides support and information to Swedish and other Scandinavian people with FOP and their families. Through FOP Sverige, Marie has organized 3 FOP conferences in Sweden over the years, and she has worked to ensure that important information about FOP is available in Swedish – including parts of the FOP Treatment Guidelines. Marie has also been interviewed about FOP numerous times by Swedish news media, and has given speeches about FOP in Swedish to medical professionals. More recently, Marie organized the FOP ”Collection Project” in which cans for donations by the public are placed in stores and other public places. Marie has also designed and organized FOP Sverige’s new website, and has been writing a regular Swedish language blog on the site about her family’s life with FOP and important news concerning FOP. Throughout this time, Marie has been a source of help, strength and support for families dealing with FOP, especially in cases of new diagnoses (both in Scandinavia and elsewhere). One mother of a recently diagnosed child in Sweden calls Marie the ”FOP Angel”. FOP Sverige Milstolpar 2004-2012

Läs om de andra pristagrna här GRATTIS!

”Den som inte tror att EN människa kan göra stor skillnad har aldrig haft en mygga i sitt sovrum” ~ Okänd

Marie H Fahlberg
Vinnare av IFOPAs Jennie Peeper Outstanding International Leadership Award 2012.
Nominerad till David Legas stipendium 2012.
Ps. Här började resan efter det första mötet med Dr Fred Kaplan 2001 på ett FOP-seminarium i Valbert, Tyskland. 7månader efter Hugo fått diagnosen FOP.

Hugos första möte med Dr Kaplan 2001 och vad vi förstod senare ”som vanligt sittandes på golvet”

 

Stöd FOP-drabbade genom bidrag till FOP-forskningen

Bankgiro 5823-7140
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