Max Appeal August 2015 
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Max Appeal E-Zine
August 2015
Events, News & Information
Dear Max Appeal members, welcome to your August 2015 newsletter.  We hope your enjoy seeing what events and fundraisers are coming up
Also to keep you updated with important news and to remind you what Max Appeal can offer you.
If you do have any comments or queries, please email us at
  • Forthcoming events & fundraisers in August
  • Thank you
  • Research & News
  • How to order Consensus documents
  • Change of contact details
Forthcoming events and Fundraising ideas
Summer Outing Scarborough Beach
23rd August 2015
Enjoy a day at the beach with other Max Appeal families. Beach day is becoming an annual tradition so if you haven't tried it then please join us this year for an informal fun day. 

To find out further details and meet up times and places, please go to:

22k for 22q Dublin
2nd August 2015
Join Team 22k for 22q Dublin - An amazing international group of runners, walkers, and volunteers raising awareness for 22q11.2 deletion and duplication syndromes by participating in the Dublin Rock-n-Roll Half Marathon 22k or Fun Run 3k on August 2, 2015 on the beautiful Emerald Isle! 
To Find out more go to:

or go to

Visit to the Palace of Westminster
26th October 2015
The Rt Hon Alistair Burt MP, Minister of State for Community and Social Care at the Department of Health has kindly arranged a Tour of the Palace of Westminster.
The event will be from 10.30am - 2.30pm. 
We only have 25 places for Max Appeal members. Please email if you would like to put your name forward for a place. As places are limited, we will hold a ballot if the event is over subscribed.

August member meet ups

8th August 2015  11.30am Sarah is organising a family meet up on Aberdeen beach on Saturday 8 August at 11.30 on beach area in front of big wheel. Further details to follow.

12th August 2015 11am - Stourport on Seven.  Picnic in the park.  Further information to follow on the Max Appeal Web page...

Anybody can setup their own Max Appeal meetup.  Please do me email us at and we can help get your meetup details out to all of the members.

Have a Brew for 22Q!
With an estimated 35,000 people, who are living with 22Q in the UK, you can do something to help and have a great time with friends and family.
Put the kettle on....Get together, invite all your friends and family, set the date, put the kettle on and get the cakes in the oven. It's as simple as that. 
Free Tea Party PackHave a Brew pack includes 6 balloons, 6 cake toppers, A3 poster, bunting and money box. 
To register your event and request your free pack please email: Please send your name contact / address. 
For further information please go to
A big Max Appeal Thank you to....
Thank you Sarah Ryan
Teddy Bear Cake Raffle
Sarah Ryan was busy baking cakes again for the Max Appeal Youth Weekend. 
Thank-you for another Teddy Bear Cake which was raffled and raised £19. 
Well done Sarah
Trustee takes to his bike to raise money for Max Appeal
Our very own Martin Kennedy (trustee) raised £830 on his 5 ferries challenge around Scotland.
Teri Martin's Darts Night
Our own Mark Tripp reporting: 
They raised a fantastic amount of £611 on the night, 
It was a great night and the darts was very competitive, Max Appeals very own Teri Martin hitting the winning double top to claim the ladies triple title for her team. 
The raffle raised £218 which was mainly booze and then it was promptly auctioned back to the audience and hence why the total kept growing. After I had made my speech one gentlemen walked up and gave me £100 from his pocket, it was his bookies money for the following day but wanted to give it to Max Appeal instead. - Thank you Mr Anonymous. 
For the full story please click here
Lee & Mark Mitchell's Miles Fundraisers for Max Appeal
They are now currently 4 events into our Fundraising Challenge for Max Appeal with 2 left to go. At the beginning of 2015 they set themselves 2 goals one was to complete 6 unique challenges and the other was to raise awareness for 22Q11DS and a minimum of £5000. As of right now they are on track to successfully complete the goals. 
For the full story and how to donate please go to
Max Appeal Youth Weekend, Cranham Scout Camp. 23rd- 26th May 2015

Special thanks also to Mary Lonsdale in helping to keep the kitchen running smoothly and supplying plenty of food, Sarah Ryan for her help and all her wonderful cakes and all the parents who came along and helped out and generally ensured the camp was another successful Max Appeal Activity. 

Please click link below for full story
Thank you to all of our volunteers and fundraisers
Please join us in saying a massive ‘thank you’ to our wonderful volunteers who help us in delivering support across the UK.
Research & News
What is the prevalence of 22q deletion in the population?
Prevalence of recurrent pathogenic microdeletions and microduplications in over 9500 pregnancies 

What is the prevalence of 22q deletion in the population? 1/992 and duplications 1/850 

New article just published.

National Congenital Heart Disease Audit - Patient and Family survey
We have been asked to help gather information for this project: 
Congenital Heart Disease (CHD) affects around 1 in every 100 children born around the world, one third of whom require an intervention during infancy. 
50 years ago, hardly any of the children requiring an intervention would have survived. 
Sadly, in many developing countries, this is still the case. 
In contrast, in the UK and most other countries in Europe and North America, advances in diagnosis, treatment and surgery mean that the percentage survival rate for such children is currently in the high nineties, and rising.  
Over 10,000 CHD procedures are performed in the UK and Ireland each year on children and adults in over 30 centres, with children under 16 years of age treated exclusively in 14 of these units. 
We would really like you to take a look at the data presented on the NCHDA website and then fill in a short online survey to help us understand what changes need to be made to make it as user-friendly as possible. 
For further information please go to
Information Ordering
If you wish to order a copy of the parent/carer or professional consensus document, please use the link below.
Copies can also be downloaded.
Contact Details
Please do remember to update us if you change your address, telephone number or email address so that we can keep our database correct and keep you up to date with what's happening at Max Appeal.
Please email us at
Thank you
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