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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.
Showing posts with label giving. Show all posts
Showing posts with label giving. Show all posts

Thursday, April 7, 2011

1/2 Marathon for kids with VCFS

This year we not having a fundraising dinner for VCFS,  however we do have a fantastic guy/ parent of a VCFS child who in the past 3 years has turned his life around from fat couch potato to Iron Man.

He is 3 weeks away from participating in the Port Macquarie ½ Iron Man Marathon. He is running for VCFS and raising funds to  help send the kids on a much needed retreat/camp. This would be the first camp of its kind in Australia for VCFS Kids.

I urge you to read his blog and if you are able donate to the cause,  so all the kids get this fabulous opportunity.

Also remember to send Scott a word of encouragement.

Sometimes it takes special people to go out of their comfort zone to help raise awareness and money. I know there are many people in our communities that do this, but obviously this is one close to our heart. It is people like Scott that make me feel like all my work on the VCFS 22q11 Foundation is worthwhile.

http://slongden.wordpress.com/

You can also visit the VCFS site for details  www.vcfsfa.org.au

Scott in action wearing his VCFS hat.


PS: We are having a VCFS 22q at the Zoo day on May 22 . Just $14 pp  A fun day at the zoo that’s it! see our website for details http://www.vcfsfa.org.au/


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Wednesday, December 1, 2010

Supporting those who support us

Today my blog is about supporting others who support the VCFS 22q11 Foundation. We are very fortunate to have a number of people and companies that support us. Each and everyone of them is a wonderful and giving person or organisation. We have been affiliated with many of them for more than 5 years.

So I say to you, in a world full of take take take, its time to give! Give back to those who have given to us. Just a share or like on Facebook, or a small tweet on Twitter, a Digg on DIGG or book mark on stumble upon whatever your choice of social media one little word may help one of our wonderful supporters.

Here are some links to our supporters, if any of them can assist you in anyway I would personally recommend all of them!

Beautiful Soles

Boyd Design

Israel Smith Photographers

Tex Whitney Productions

Storage King

Mrs A in The Cove

If you want to know more about our foundation visit www.vcfsfa.org.au

Have a wonderful giving day!!

Maria
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