Fibrodysplasia Ossificans Progressiva FOP | ACVR1(c.617G>A; R206H)
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Outstanding International Leadership Award 2012

I juni 2012 ringer Jennie Peeper, president och grundare av den internationella FOP organisationen IFOPA i USA. Hon berättar att en av årets utärkelser går till Marie Hallbert Fahlberg.

Nomineringen;
Marie Hallbert Fahlberg
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” and Svenska/Skandinaviska FOP föreningen, 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 calls Marie the ”FOP Angel”.

Varje år delas priser i fyra olika kategorier ut 2012 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

”A heartfelt thanks to each of the award recipients for their extremely important work for the FOP community. The lives of people with FOP are enriched incalculably by your accomplishments” ~ The committee, on behalf of the IFOPA.

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


Stöd FOP-drabbade genom bidrag till FOP-forskningen

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