Ivy'v Story What care and support is available for those with deletion 22q11 syndrome?


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About Us

Max Appeal...

.... is all about sharing, about hope and about standing with our families.

Our mission is to try to ensure that every person with 22q11.2 deletion lives an independent and prosperous a life as possible. That's not mission impossible!

What do we do?

* We run events for people of all ages to share experiences, develop and learn.
* We provide information and resources.
* We provide support to families and individuals to empower them.
* We support research to expand knowledge of the condition.
* We make it possible for families to talk informally and get together.

Max Appeal was founded by parents of children diagnosed with DiGeorge Syndrome/VCFS/22q11.2 deletion. We are a small national charity, run almost exclusively by a group of dedicated volunteers backed up with a knowledgeable panel of medical professionals. Max had a short life but Max Appeal is a charity with a vibrant life of its own.
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Want to be involved?

Image: 09-06-08_1239_medium.jpgIf you would like to be involved with Max Appeal, or think that you have somthing to offer, we would love to hear from you.

Perhaps you have good mouse skills, are good on the phone or can write articles for newsletters and press releases? Ruby and Ted find volunteering for Max Appeal quite exhausting, though they have an uncanny knack for identifying which piece of paper is most pressing... by sleeping on it!

Our database is extensive and we need to constantly monitor our information, things like up to date addresses of hospitals and so on, so that we can communicate effectively with our stakeholders. This is very important work as it is the mainstay of the charity's functioning.

Could you help out an event?

Image: p1010063_medium.jpgYou can see the welcoming committe for our refereshments marquee at the end of the Great North Run to meet and greet our team of runners. This sort of work is ideal for under 12's, especially in the absence of any chimneys requiring sweeping... seriously, the boys did a fabulous job, they worked well together and generally did Max Appeal proud. In fact they possibly covered more miles in their running about than the those in the half marathon!

Grown-ups are also welcome; we have a great group of people who regularly pitch in to help out at things like our Splash Camp weekends for teenagers.
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Charitable status

Image: charity_commission_logo_medium.gifMax Appeal is a registered charity (number 1088432), which means that it is bound by rules and ethics that date back many hundreds of years to preserve honesty, integrity and the ethos of charity.

It is the role of the trustees to ensure that the charity achieves its aims and objects as set out in its constitution. Max Appeal has a very limited income and uses its money as prudently, diligently and frugally as possible to maximise its impact for the benefit of the 22q11.2 community.

If you'd like to become a trustee, then let us know. The attributes of a good trustee are loyalty and empathy, and a willingness to learn and to give. If you have an area of expertise such as law or accounting, then that is valuable, but equally so is a motivation to make things happen. Being a trustee can be demanding and hard work but hopefully you will feel that you are making a difference.

This links you to the Charity Commission web page for Max Appeal.
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Max Appeal About Us Leaflet

Please click below to download a copy or the order form to request a copy sent in the post.

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