VCFSEF 18 th Scientific Conference New Brunswick, NJ USA

1. VCFSEF 18th Scientific ConferenceNew Brunswick, NJ USA

2. What did we expect? • Practical Solutions • Research updates • Develop relationships/alliances • Information for the Australian Community What did we get out of the conference? • Updated research • Information on new technology to assist those with the syndrome • Techniques to aid in disclosure to family, friends and the affected individual • Motivation to continue • Many new alliances for research, friendships and awareness of VCFS 22q11.2DS

3. Presentations • There were more than 80 presenters, moderators and professionals to consult with! • I attended 95% of the presentations

4. The Stand Outs • The VCFS Plan of Care • Addressing Bullying • Focus on Math Interventions • Disclosure of Diagnosis • Theory & evidence against use of Non-speech Oral Motor Exercises • Mentoring Program in Israel • The Same Name Campaign • Is early Intervention a useful clinical treatment • Integrating Cognition, Emotion and Psychiatry for treatment of the syndrome • What happens to ADHD across time in VCFS • Stress and Anxiety in the syndrome • Coping with Mental Illness • Intervention for social skills deficits • Web-based Socio-emotional Remediation I will only touch on a handful of the presentations.

5. VCFS Plan of CareThe Childrens Hospital of Wisconsin

6. The VCFS Plan of Care (cont) • The plan of care is a table of recommended screenings at the time of diagnosis and is meant to capture the common issues associated with the Syndrome. • Your child may need additional evaluations based on their history. • This plan can assist you & your doctor keep track of what screenings your child has had and when future screenings are required. • There is a copy of the plan of care on the VCFS 22q11 Foundation USB sticks

7. Bullying • Dr Tracy Vaillancourt from Canada hosted a breakfast and also presented on Bullying- the main component was that advocacy and knowledge stops bullies • Bullies usually stop within 10 seconds if an adult or another person intervenes on behalf of the victim. • A great way to stop bullying is to educate the children about the specific differences of the child,. Don’t make it a massive issue but explain that these are the reasons eg; little jonny has hearing aids to help him hear what you say, etc….

8. Bullying (cont) • Bullying can take many forms • Physical, verbal, social, cyber, racial, sexual • Long term consequences • Academic difficulties, truancy, increase in absences, somatic complaints, stress related illness, physical health problems, low self-esteem, depression, social withdrawal, social anxiety, loneliness, suicide, aggressive behaviour • During an average week teens spend less than 8% of their time talking with adults and 1/3 talking to peers and it is reported they feel most unhappy when talking to peers • The need to belong is inbuilt in all of us • Social ties are essential for optimal development • Preventive efforts to end bullying in schools and communities needs to be accelerated • Teachers and principals must take all acts of bullying serious and not disregard any child who makes a complaint. They need to be vigilant and watch for changes in the most susceptible children

9. Focus on Math InterventionsBy Donna Cutler Landsman • Most children with VCFS will have a maths difficulty of some kind • We need to focus on number sense • Emphasis on math language • Formal teaching of math symbols and relationships to number concepts • Use a visual approach • Instruction in mental visualization to aid understanding

10. Maths (cont) • Dyscalculia • Inconsistent computation • Poor mental math ability • Poor math memory for algorithms • Difficulty with math concept mastery • Unable to picture mechanical processes • Easily disoriented, losses things and is absent minded • Difficulty remembering directional concepts • Losses track of scores in games or steps • Difficulty with time management • Poor name or facial retrieval

11. Math (cont) • Number Worlds curriculum may aid • Kumon may assist • Visual approaches • Rote learning • Focusing on facts • Classroom Accommodations • Use graph paper • Opportunity to correct answers • Uncluttered papers • Take exams 1 – 1 • Additional practice problems on tests • Relate math to the real world • Use smart board or computer

12. Theory & evidence against use of Non-speech Oral Motor ExercisesProfessor G Lof

13. NSOME (cont) • This presentation by Prof Lof explained the logic and theory against using NSOME. • I can provide you with the printout of his presentation should you wish

15. Web-based socio-emotional remediation for persons with VCFS Bronwyn Glaser • A new web based program will be out in August to assist with remediation of socio emotional issues of people with VCFS • Research suggest that social deficits in VCFS can be enriched using Social Enrichment programs • The Vis-à-vis program specifically aids attention reasoning abilities, facial emotion recognition and behaviour • The program appears to help two groups of developmentally delayed children and adolescents in developing their attention and emotion recognition skills

16. Conclusion • The international conference was exciting . • The conference not only offered research results but practical and useful techniques and ideas to assist in the development of those affected by the syndrome. • I met with many doctors and professionals and will continue to do so. • A brief of the presentations will be available online at www.vcfsfa.org.au soon! • All members of the VCFSEF will have access to the presentations and fact sheets from the conference www.vcfsef.org • I have been invited to the International 22q Foundation conference in Florida in 2012 Thank you