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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.
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Showing posts with label facebook. Show all posts

Tuesday, August 9, 2011

VCFS 22q11 Foundation Conference Sydney 2011

2011 Conference & AGM
28th August 2011 , 9.00am
The Children’s Hospital Westmead
Lorimar Dodds Auditorium
                              
AGENDA

8.30am                Registration / Morning Tea

9.00am                Maria Kamper - President Welcome
9.10am                Laurie Taylor – AGSA , What does AGSA do & Sibling workshop
9.30am                Tony J. Simon, Ph.D , UC Davis M.I.N.D Institute  -Integrating Cognition, Emotion & Psychiatry for Treatment in 22q11.2DS Via Video
10.00am              Dr Linda Campbell – Centre for Brain and Mental Health Research University of Newcastle
10.30am              Madeleine Randell (Hons student) - "Attitudes to sexuality, relationships and parenting
10.40am              Emma Gallagher (Prof Doc Clin Psych student)- Depressive symptoms in adolescents with velocardiofacial syndrome as they transition into emerging adulthood"
10.50am              Lisa Phillips (M Clin Psych student) -"How do young women with Velo-cardio-facial syndrome view their personal relationships, sexuality and parenthood?"
11.00am              Brooke Sinderberry - (PhD candidate) "Resilience in children with chronic illness"
11.30am              Neil Nicoll – Behavioural Psychologist -  Social Skills
12.00                             AGM
12.15 pm              Lunch with the Experts
Meredith Wilson – Clinical Genetics Westmead Childrens Hospital
Neil Nicoll – Behavioural Psychologist


3.00pm                Kathy Angkustsiri, M.D., Behavioral Pediatrician, UC Davis M.I.N.D Institute -  Anxiety in Children with 22q11.2DS and its Effect on Functioning Via Video
3.30pm                Maria Kamper – VCFSEF 18th Scientific conference review
4.00pm                Afternoon Tea

Workshops
9.30am – 3.00pm        Sibling Workshop (children to join craft at conclusion of their workshop)
9.00am – 4.00pm        Craft/Activities Workshop
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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, February 2, 2011

World Rare Disease Day

World Rare Disease Day
28th Feb 2011
Vivo Cafe
388 George Street
Sydney NSW 2000
6.30pm to 8.30pm
$35pp includes cocktail food and drinks
contact: president@vcfsfa.org.au
or book online www.vcfsfa.org.au
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