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The VCFS and 22q11 Foundation supports families and persons affected by VCFS or Deletion 22q11.

THe VCFS 22q11 Foundation

Australia
Velo-cardio-facial syndrome (VCFS) is a genetic syndrome. It is the result of a submicroscopic deletion on the long arm of Chromosome 22 in the “q11” region- deletion 22q11. VCFS affects approx. 1 in 2000 - 3000 persons making it the second most prevalent genetic syndrome after Down syndrome VCFS is the most common genetic syndrome associated with cleft palates VCFS is the second most common genetic syndrome associated with congenital heart defects 99% of the VCFS population will have a learning difficulty or disability 30% of the VCFS population will develop a mental illness VCFS has more than 180 annomolies associated with it The name velo cardio facial syndrome comes from the Latin words "velum" meaning palate, "cardio" meaning heart and "facies" having to do with the face.

Sunday, August 21, 2011

VCFS 22q11 Awareness Week

Hi everyone,

I have been very busy lately and I haven't blogged for a while. So now is the perfect time. This week is the VCFS 22q11 Awareness week in Australia and in many other states across the USA. I feel its is very important for us to share information about this condition.


  • VCFS affects approx. 1 in 2000 - 3000 persons making it the second most prevalent genetic syndrome after Down syndrome




  • VCFS is the most common genetic syndrome associated with cleft palates




  • VCFS is the second most common genetic syndrome associated with congenital heart defects




  • 99% of the VCFS population will have a learning difficulty or disability




  • 30% of the VCFS population will develop a mental illness




  • VCFS has more than 180 anomalies associated with it




  • I read an article the other day where a man was not diagnosed until he was 43 after 30 years of seizures!!!! Why oh why does this have to happen. If VCFS 22q11 affects 1 in 2000 why on earth do most professionals in the medical industry not know about it?? LETS CHANGE THAT

    It doesn't take a lot to spread the word. I urge all of you to share information about VCFS 22q11 on Facebook, Twitter and all other social media avenues. Email friends and family world wide. Share a link to our website.

    I am dedicated to making this disorder a household name. Some might say its a bit of an obsession with me. Well they may be right. I just feel that I cannot sit back and let people go untreated, mis diagnosed or not diagnosed at all .

    Please help me on my mission!!!

    Maria Kamper
    President
    VCFS 22q11 Foundation
    http://www.vcfsfa.org.au/

    1 comment:

    1. Hi Maria! I joined your blog today. I am currently studying to be a speech-language pathologist in Wichita, KS. Our professor asked us to join a blog pretaining to a particular disorder, I chose VCSF. I am interested in the experiences you may have had as a mother of a child with VCSF, particularly in the area of speech and language. I would love to hear back from you soon. Thanks:)

      ReplyDelete