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/

1/2 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/