WHO'S WHO OF VCFS / 22Q

As we know VCFS has many names and here is a list of the most common

• Velo Cardio Facial Syndrome
• 22q11.2 Deletion Syndrome
• DiGeorge Syndrome (DGS)
• Shprintzen Syndrome
• CATCH 22
• Conotruncal anomaly face syndrome
• Cayler cardiofacial syndrome

Whatever the name we are all in the same position; looking for information and support.

I have been chatting a lot lately to many different people and organizations from around the world and I must say it can be confusing trying to figure out who is who and which organizations are support groups or for research,  which are treatment programs and which ones are information/education organizations.
Well I have decided to group some of the main organisations so we know who is who of VCFS and 22q. There may be many more, however these are the ones I know. The information about each organisation has been taken directly from their websites and are not necessarily the views of the VCFS 22q11 Foundation or myself. I am not connected to any of these organisations except the VCFS 22q11 Foundation Australia of which I am president. I am a mother with a child who has VCFS/22q11.2 Deletion Syndrome.
I felt it important to separate the organisations to help us as parents understand what each organisation is for and what each can offer us as parents.


What I as a parent and President of the VCFS 22q11 Foundation would love to see in the future is all these groups coming together to form a collaborative or alliance to share information and treatments for the betterment of those affected and to assist in raising awareness of VCFS/22q across the international community.


Education Organizations


VCFS Education Foundation – http://www.vcfsef.org/ 
The Foundation is an international not-for-profit organization dedicated to providing support and information to individuals who are affected by Velo-Cardio-Facial syndrome, their families, physicians and other practitioners. The Foundation is independent of -- and not affiliated with -- any particular institution. The foundation is run by volunteers and the head of the foundation is currently Executive Director,  Karen J. Golding-Kushner, Ph.D.


The VCFSEF is the only group I can find that is absolutely for education and information of VCFS/22q11.2 Deletion Syndrome. They are Not for Profit. They have an international conference every year and everyone in the VCFS/22q community internationally is invited to present and attend the conference. They are NOT a support group; they are NOT a research or treatment group. Their mission is to increase awareness and disseminate information to educate those with an interest in the syndrome. They provide clinical and research information for professionals and for those affected, and provide educational, clinical, and scientific information to the professional and lay communities. They do not recommend any treatment program over another, they do not recommend any support group over another, they do not provide funding for research, and they do not offer financial assistance for any person or organisation.


It is important to understand that the VCFSEF is purely to provide Education and Information about VCFS/22q to the international community. They do this through their website, conferences and newsletters. 
To me this is one of the most important organisations in the world. They provide unbiased information to aid in the education of the community about VCFS/22q11.2 deletion Syndrome.  I personally would urge all people in the international VCFS community pay the USD$40 membership so the conferences can continue in the future.


Treatments/ Research Centers (in no particular order)


M.I.N.D Institute (UC Davis CA) http://www.ucdmc.ucdavis.edu/mindinstitute/research/cabil/


The MIND Institute's Cognitive Analysis and Brain Imaging Laboratory (CABIL, pronounced "cable") is directed by Dr. Tony J. Simon and funded by the National Institutes of Health. CABIL's mission is to investigate, explain and eventually treat the impairments in cognitive function experienced by children with neurodevelopmental disorders.


Upstate University Hospital NY http://www.upstate.edu/uh/ent/vcf/ 
VCFS Center


In 1997, Dr. Shprintzen established the most comprehensive program designed to assess the needs of people with VCFS and to develop the most effective treatments.  The Center has a faculty of over 30 professionals from more than 20 medical and ancillary disciplines who are devoted to the special needs of children and adults with this common genetic condition. The Center is a full time program with the most comprehensive care available anywhere and a large and active, full time research program devoted to this single disorder.

Children’s Hospital of Philadelphia 22q and You Center 

www.chop.edu/service/22q-and-you-center/home.html 


At the "22q and You" Center — established in 1996 — The goal is to provide the finest diagnosis, treatment and follow-up services to these children and their families. They also continue to lead the way in researching the 22q11.2 deletion, hoping to find out more about what causes it, how it affects children and how we can make their lives even better.
The national and international medical community recognizes our Center as the premiere site for the diagnosis and multidisciplinary management of children with a chromosome 22q11.2 deletion. Our staff includes geneticists, genetic counselors and other medical personnel specializing in the disorder.


The VCFS Clinic at Mater – Brisbane Australia
http://www.mater.org.au/Home/Services/Velo-Cardio-Facial-Syndrome-Clinic


The VCFS clinic at Mater has been developed to support children and young people to the age of 18 and their families. The clinic is co-ordinated through Kids in Mind and involves professionals from other parts of Mater Children’s Hospital.
The children and young people who attend the clinic may already be supported by other teams within Mater Children’s Hospital, other hospitals and other health professionals. The VCFS Clinic has been established to assist families coordinate their child’s care between a number of health practitioners while also helping to reduce gaps in services where they exist.
The clinic has two primary aims:
to provide coordination, clinical, and support services for children and their families

to have a significant research role in Australia and with international experts.

Chromosome 22q11.2 Deletion Syndrome Specialty Clinic - Colorado http://www.thechildrenshospital.org/conditions/genetics/22q.aspx


The Chromosome 22q11.2 Deletion Syndrome Specialty Clinic at The Children’s Hospital evaluates children with 22q11.2 Deletion Syndrome and provides comprehensive management and ongoing multi-disciplinary care for children and families affected by the syndrome. Our specially trained clinicians, who work with specialists at National Jewish Health, provide patients and families with the resources necessary to understand the diagnosis, determine the appropriate treatments and therapies and cope with the challenges involved with the syndrome.


I am sure there are other clinics across the international community. I have listed the most commonly known about clinics.


Support Groups
There are many groups around the world for the support of VCFS/22q11.


The VCFSEF has Regional Directors that can put you in contact with a support group in your area. http://www.vcfsef.org/international_network/about_international_network.html Visit the web site for information.


The VCFSEF United States Support groups Link http://www.vcfsef.org/support_groups/us_groups.html


The VCFSEF International Support Groups Link
http://www.vcfsef.org/support_groups/international_groups.html

As well as this here is a very short list of sites I know;

• VCFS 22q11 Foundation Australia http://www.vcfsfa.org.au/
• 22q Central http://www.22qcentral.org/index.html
• International 22q http://www.22q.org/
• The Dempster Foundation http://www.dempsterfamilyfoundation.org/about_foundation/
• 22q Ireland http://www.22q11ireland.org/
• Max Appeal UK http://www.maxappeal.org.uk/

There are many Social Networking Groups and Chat rooms. I will not list them here; however some of the sites listed do have links to them.


Research
There is much research being conducted across the world. Most of the websites listed above have links to the research projects.  To list them all here would be too difficult. The VCFSEF through the International Scientific Conference has speakers who provide information about the current research and outcomes. The smaller conferences around the world also provide information, results and outcomes as well. Keep yourself updated by regularly visiting the websites listed above.


Remember, support groups are NOT medical advisory groups or services; they are there to offer support and provide information. All medical treatment and related services should be referred through your medical practitioner and your medical care team.


I hope that the information I have given here is helpful and takes out confusion of the Who’s Who for VCFS and 22q.


Cheers
Maria Kamper

  

Tolerance!

Today I am writing about tolerance in the world. I read an article which spurred on a number of rants and arguements in facebook. The article was about whether children should be taken out to resturants or cafes with their parents. It went on to say that children disrupt others and that people with children should stay home or have coffee and meals at others homes. One comment was that Children should be seen and not heard!

I think the world needs to be more tolerant of others and understand that everyone has a right to go out. Not all children disrupt things. There are so many other things in this world to be concerned about.

I am a believer in discipline for children and that we should all learn to respect others as we grow up. What bothers me about this situation is that parents are being forced to hide from the public because they have children.

The sound of laughter and chatter of young children is a wonderful and innocent beauty. I am not saying that all kids are angels or that some don't need repremanding when they disturb others in cafes etc... What I am saying is that never judge a parent when a child acts out. Never judge until you have walked a mile in someone elses shoes.

More often than not when parents meet up at cafes with children in tow, it is usually one of the only times they get to go out and socialise and have some adult stimulation. In a world of so much pressure is it really necessary to condem parents who take their children out.

To all those selfish people who want to live in a world without children, maybe you should choose to stay home!

Stress worse than ever!!

Article from Childhood Development Institute!!

By Dave Paltin, PhD

Does it feel like your “stress temperature” has gone up around ten degrees the last few years?  According to the American Psychological Association’s Stress in America survey, your kids are feeling it too.  The new survey details the impact of different types of stress on the family, and the news raises some serious concerns about how children are coping with it.  According to the survey, 17 percent of children who say their parent is always stressed are likely to feel high levels of stress themselves compared to two percent of kids who report their parents are never stressed.  This means that children are not only aware of the family stress, it is increasing their levels of stress as well.  The ill-effects of stress on children’s health is a serious problem, and we know from research that experiencing family stress creates unhealthier kids.  The APA survey provides further data that suggests children and teens likely often turn to unhealthy eating or passive, inactive behavior to cope with stress.  TV watching and listening to music are higher in stressed tweens and kids, perhaps contributing to the higher levels of pediatric obesity measured over the past five years.

Far from being “character building” for children, stress places children in a situation in which they are worried but have little or no power to correct the situation.  Children are perceptive, and quickly pick up on parents’ frustration, more frequent family arguments, and negative changes in the emotional tone of the family.  What happens when they feel this tension but can’t do anything about it?  Children translate these feelings into bad habits and behaviors.  The APA survey found that parents typically underestimate the amount of impact their levels of stress have on children in the family, which is easy to justify when parents are worried about a job or financial situation. 

Given the fact that parents have real worries and that they can’t just make their own stress disappear because of the kids, what can be done to help kids with the situation?

• Watch those negative offhand comments – Its natural to express the stress through comments like “We’re stuck” and “why does it always happen just when we are getting back on our feet,” but kids take these comments literally.  Try to replace these comments with suggestions for action instead, like “we’ve really got to figure out a plan to deal with our bills.”
• Take a walk instead of turning on the electronics – Role model good stress management by asking the kids to take a walk around the block or playing catch in the backyard.  Even a small amount of physical activity can help reduce stress.
• Teach the kids to be solution-focused instead of worry-paralyzed – Ask kids about their own levels of stress and worry, and help them understand how having a plan can make the situation better. 
• Make ‘em laugh – Laughter goes a long way in busting through tension and worry.  Try a family joke night or funny mime competition to keep things funny and active at the same time.

Parents - It's Okay to Let Your Children Fail Sometimes

I found this blog on the Happy Child website. I think it is something we should all learn and understand. Thanks Happy Child for sharing this insight.

By Arun Abey - 30th October 2010

As Harvard’s Positive Psychology Lecturer and author of best-selling book Happier , Tal Ben Shahar has spent his life studying what makes people happy. And his mantra to his students is “learn to fail, or fail to learn.” 

This can be applied to parenting too. Letting our children experience minor failures, without rushing in to save them, helps them learn key skills that are essential to deal with the inevitable disappointments of everyday life.

Of course when it comes to our children, this can be easier said than done. How do we watch as our children make wrong turns, wander aimlessly or head off down streets we already know are dead ends, without warning them? How can we sit back as they under-prepare for exams, make inadequate effort in homework, or choose not to practice for sporting or music events even when we know the disappointing outcome that will result?

We do it by knowing it will make them happy – not fleetingly, but over the course of their lives. By letting our children struggle, just a little, we help them learn two of the key skills to lifelong fulfilment – developing resilience and finding flow.

Resilience

Resilience is the ability to endure harsh conditions, great setbacks and the deep sadness that may come, for example, from the death of a loved one, and eventually return to recapture your joie de vivre.

During their lives, as much as we hate to believe it, our children are inevitably going to experience adversity and hardship, which is why to ensure they thrive, we must help them cultivate resilience by letting them experience minor failures.

When our children get a detention for not doing their homework, fail a test or are left off a school sports team, they are able to see how their actions impact directly on outcomes helping them learn problem-solving skills, persistence and inner-strength.

Flow

Flow is a state of total engagement where time passes unnoticed. It occurs when our highest skills just meet our highest challenges and research shows finding it is one of the keys to a happy life.

But in order for our children to find flow we must allow them to be challenged, not just remain in their comfort zones. After all we don’t find flow when we are bored...

Tal Ben Shahar calls this place 'outside the comfort zone but before the panic zone, the stretch zone'. This is a learning space that requires children to exercise courage and tolerate a certain amount of fear. It is where flow, optimal functioning and most learning occur.

Failure as opportunity

As parents it’s important to let children know that any failure on their part is normal, expected and even welcome, as it means they are learning and stretching themselves.

Some of the most successful people in the world see their failures, not as failures but as part of the journey to success. Before inventing the light bulb Thomas Edison made more than 1,000 failed attempts which he refused to call failures.

“I have not failed 1,000 times” he said. “I have successfully found 1,000 ways not to make a light bulb.”

http://www.happychild.com.au