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/

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 18^th 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