If you are a part of the VCFS/22q11 community it would have been hard for you to miss out on all the hype that has surrounded the last 24 hours across the world in relation to VCFS/22q11.2 deletion/DiGeorge/Shprintzen Syndrome etc..
In 65 Cities and in more than 13 countries spanning 3 continents thousands of people joined in the campaign to raise awarenss of 22q11.2 Deletion Syndrome. The second most common genetic syndrome in the world!!!
This initiative began as a local awareness campaign organised by the International 22q Foundation, the 22q and You Center and The Dempster foundation, however with social media it has become a phenomenom for all those affected by 22q11.2 Deletion
It really doesn't matter what organisation you are a part of, support, rely on etc... This day has proven that we are a community. A community of medical professionals, patients, celebrities, families, educators, not for profit groups and support groups.
Our qualifications, prestige, celebrity, income and demographics were pushed aside for the first time and we were all equal and joined in our reasons for being a part of this day. That is to RAISE AWARENESS OF 22q 11.2 DELETION SYDNROME.
Lets keep this rolling, lets continue to be united as one, lets forget the arguments about what it should be called, lets put our egos aside, lets learn from each other!!!!!!!
We are all in this together that is for sure. Lets remember the saying
"UNITED WE STAND DIVIDED WE FALL"
Congratulations to each and every member of the VCFS/DiGeorge/Shprintzen and 22q community.
The VCFS and 22q11 Foundation supports families and persons affected by VCFS or Deletion 22q11.
Supporters of VCFS
THe VCFS 22q11 Foundation
- VCFS 22q11 Foundation
- 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.