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Max Appeal December 2015 
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Max Appeal E-Zine
December 2015
Events, News & Information
Dear Max Appeal members, welcome to your Christmas December 2015 newsletter.  We hope you enjoy seeing what events and fundraisers are coming up
We also would like 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 info@maxappeal.org.uk.

Look out for all the events going on in November
22nd November - 22/11 -Is 22q11 DS awareness Day.  What are you doing?  How about hold a "Have a brew for 22q" event.  Details to order your free pack below.


 
  • IMPORTANT NEWS
  • Forthcoming events & fundraisers in November
  • Thank you
  • Achievements
  • Research & News
  • Donate
  • How to order Consensus documents
  • Change of contact details
5th December 2015
22q11 DS Parent Conference

Max Appeal's parent conference for 22q11 Syndrome at Cardiff University on Saturday 5th December. We will have representatives from the Cardiff 22q11 DS Clinic, information on research studies from Cardiff University and Great Ormond Street Hospital for Children, as well as other professionals expert in the management of 22q11 DS.
Book your tickets through the Max Appeal website. 

AVAILABILITY LIMITED NOW
Read more:  https://www.maxappeal.org.uk
/news/content.asp?ni=276
Forthcoming events and Fundraising ideas
Have a Brew for 22q, Henderson Church Hall
Sunday 22nd November 2015 2-4pm
Have a Brew for 22Q! - 22/11 Henderson Church Hall, Kilmarnock
Raising Money for Max Appeal 
Sunday 22nd November 2015 - 2-4pm 
Henderson Church Hall, London Road, Kilmarnock 
£3 entry £1 under 10's 
includes tea coffee and cakes 
Crafts and gift stalls. 
Please contact Max Appeal should you have any queries
.
https://www.maxappeal.org.uk
/news/content.asp?ni=288
 
Have a Brew,
Wonderworld Softplay, Kirckaldy
29th November 2015
 
22q family get together Sarah is organising a get together party. Have a brew at Wonderworld Softplay, Kirckaldy on Sunday 29th Nov 1.30 pm to 3.30pm.
 
Exclusive use of party room, play & food. It is approx £10 per child. Max Appeal will help subsidise this cost, so will only be £5 per child.

For more information and booking form:
https://www.maxappeal.org.uk
/events/content.asp?ms=5&ei=163
 
22Q11 DS APPG
8th December 2015
 
The 22q11 Syndrome APPG is to meet at Westminster on the 8th December.
 
Please see website for more information
https://www.maxappeal.org.uk/events/content.asp?ms=5&ei=167
Please do think about asking your Mp to join the group.
Agenda is still to be arranged....
Have a Brew for 22Q!
22/11
Look out for more "Have a Brew for 22Q" events near you.

 
All of the "Have a Brew for 22Q" events can be found here:
https://www.maxappeal.org.uk/events/

Or why not hold your own?

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:  steph@maxappeal.org.uk Please send your name contact / address. 
For further information please go to http://www.maxappeal.org.uk/news/content.asp?ni=227
Thinking of running for Max Appeal?

Sign up and run for Max Appeal.
We will support you with fundraising help and specially Max Appeal branded running vests.


Great North Run 2016
11th September 2016
 
Max Appeal has secured a Bronze + package for the Great North Run 2016, guaranteeing 35 charity places our most ever and a marquee. Email paul@maxappeal.org,uk for an entry form
Busy Bears here at Max Appeal
Upcoming Max Appeal attendances
  • 16th November 2015 Max Appeal awareness at Noah's Ark Childrens Hospital  
  • 17th November 2015 GOSH, National Study Mental Health Needs, in children & young adults.
  • 17th November 2015 to 18th November 2015 BCCA Meeting.
  • 19th November 2015 to 20th November 2015 Primary Immunodeficiency Network UK
For more information, please click here:  https://www.maxappeal.org.uk/
events/default.asp
 
Member meet ups
& Fundraising.
Anybody can setup their own Max Appeal meetup.  Please do me email us at info@maxappeal.org.uk and we can help get your meetup details out to all of the members.

Or if you're looking to do some fundraising and would like help to promote your event, please do contact us.  We can add the details onto Facebook and our webpage and newsletters.
A big Max Appeal Thank you to....
John Disley Oxford Half Marathon
A massive cheers and thank you to John Disley for his support to Max Appeal by running the Oxford Half Marathon. 
At present £755 raised and still coming. 
Well done John !!!
Bingo Night May 2015
Back in May, Mark attended the bingo night run by Kay Martin ( mum of Terri Martin and grand mother to Jacob ) in Kings Lynn. 
We received a cheque for £455 that they had raised. 

Thank you all so much for your support and thank you for holding a fun bingo night for Max Appeal
Thank you Jayne for holding a "Have a brew for 22q" fundraiser for Max Appeal
A massive thank you to Jayne Rabbitts for her "Have a brew for 22Q" event. 
She says they all had an amazing time with lots of people. 
Her daughter works for Waitrose and they kindly donated some really nice raffle prizes. 
They raised a whopping £300! 


 
Many thanks to Peter Heley
Many thanks to Peter Heley who secured £500 for Max Appeal through his employer London Overground Railway. 
Great work Peter, thank you for supporting Max Appeal
 
Thank you Harry Jones
Thanks to Harry Jones nephew of Dave Jones, who completed his first half marathon at the Birmingham Half marathon raising £274. 
Well done and thank you for supporting Max Appeal.
Thank you to all of our volunteers and fundraisers
 
Please join us in saying a massive ‘thank you’ to our wonderful volunteers and fundraisers who help us in delivering support everyday across the UK.
Achievements
22Q Achievements 
We would like to share with you the wonderful achievements accomplished by our 22Q members:

To see more of our fantastic 22qer achievements please click here:
https://www.maxappeal.org.uk
/max_and_friends/achievement_gallery
George
 
George - Man of the Match - October 2015
George goes to a club called Aiming High which is a council run scheme for children with disabilities. The football club was a half term session and he stayed from 10-2 
Here is a picture of him receiving his little trophy from the coach

 
Will
 
Will with his Duke of Edinburgh Bronze Award November 2015
We're so proud considering he has severe Tracheobronchomalacia, his lungs are at 40% capacity and he has oxygen at night, which was fun when we went camping overnight!

 
Research & News
Sympathies to all at Cults Academy, Aberdeen
 
Our thoughts are with staff, pupils and their families, and the community of Aberdeen following the devastating incident at Cults Academy. 
Max Appeal feels a very close affinity to the school as it has been a great supporter of Max Appeal for many years because one of their former pupils, Max Lechner, was affected by 22q11DS and sadly died following heart surgery.
 
Young Ivy wins bravery award
 
Sleaford Standard Newspaper: 
A youngster affected by a genetic disorder has been honoured for her bravery at the Yorkshire Children of Courage Awards (in partnership with Lincolnshire). 
Ivy Mitchell, aged three, of Helpringham was born with 22q11 deletion or DiGeorge syndrome. 
The awards, run by the St James Place Foundation, were held at New Dock Hall in Leeds on October 16 and Ivy won the award for outstanding bravery in the 0-12 year category.
For full story, please follow link below

https://www.maxappeal.org.uk
/news/content.asp?ni=289

 
Sarah reports on another Research Project Experience
 
Research with Maria Rogdaki in London both at Kings College and Imperial College Hammersmith
On Wednesday 16th September 2015 I had the pleasure of meeting with Doctor Maria Rogdaki who came to our house to interview me for a 22q research project. Maria is part of the Psychiatric Imaging Group at Kings College London, and her research project is looking for male and female volunteers aged between 18 and 65 to participate. 
They are particularly looking for carriers of the 22q11 deletion syndrome. 
To read the full story, please click here:
The Max Appeal Adam posters were the inspiration for the Dutch support group
 
www.Steun22q11.nl campaign for raising awareness of 22q11The Max Appeal Adam posters were the inspiration for the Dutch support group's(www.Steun22q11.nl) campaign for raising awareness of 22q11. They liked the idea and made their own version to help raise awareness in Holland. They have created posters with a number of children's images and they have asked their members to share them in their local communities and raise awareness of 22q11. Good ideas spread far and wide.
 
Lotherton Hall - Max Appeal Family Day Out - 28th October 2015
 
A lovely a 22q family meet up today at Lotherton Hall, it would be fair to say the weather wasn't kind.... in fact it lashed it down to start off with so we had to retreat to the cafe for a coffee and a bun smile emoticon All came good in the end though, lovely people! 
Max Appeal regularly organises family meet up days. If you would like to help arrange something in your area, please do get in touch. info@maxappeal.org.uk
 
Houses of Parliament 
Max Appeal Family Day out - 26th October 2015
An excellent day spent in Parliament organised by Mark Tripp -
thank you from us all Mark. 
We had the pleasure of a really interesting tour round hosted by the office of Mark's MP Alistair Burt. 

.

 
Overlaps....Paul Willgoss MBE...
 
 
It's time to get trekking: Four Multiday walks, one each in England, Scotland, Wales and Northern Ireland.It's time to get trekking: Four Multiday walks, one each in England, Scotland, Wales and Northern Ireland. 

With a rucksack on my back and a Children's Heart Federation flag waving proudly, sponsor me here: http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=madmeanderings (as normal I pay my own travel and gear costs, every penny goes to CHF to help kids born with their heart conditions)
For Paul's full story, please click here:
https://www.maxappeal.org.uk/news/content.asp?ni=290
Carol Tripp is hosting a 'Have a Brew for 22q' event, 12th November in Kyrenia, North Cyprus
 
First International "Have a Brew for 22Q"Carol Tripp is hosting a 'Have a Brew for 22Q' event on the 12th November in Kyrenia, North Cyprus, she hopes to have 30 plus attendees from her local craft group and they will be selling cakes and holding a raffle, the local English speaking newspaper has said they will attend too, to write a small article. 

Full write up and pics to follow for the website as soon as I get them but I think this is the first international 'have a brew' event. 
Full story: https://www.maxappeal.org.uk/
news/content.asp?ni=292
Max Appeal Christmas Card Competition
Well you probably don't want to be reminded, but it's only 6 weeks to Christmas!

Max Appeal Christmas Cards will be available for sale very soon.

 
Volunteers Wanted
 
The Psychiatric Imaging Group at Imperial College London is looking for male and female volunteers aged between 18-65 to participate in a research project. We are looking for volunteers who are carriers of 22q11 deletion.
Please click here for further details https://www.maxappeal.org.uk/research
/kings_college_london_-_psychiatry_study?adminaction=edit
Family Fund
Family Fund is the UK’s largest provider of grants to families raising disabled and seriously ill children. Last year they helped 72,043 families with a wide range of essential items, awarding a total of £33million in grants and services. To request an application pack, either visit http://www.familyfund.org.uk or phone Family Fund on 01904 621115.
 
Keep up with news and events from Family Fund by joining the Facebook page http://www.facebook.com/familyfund  or by following Family Fund on Twitter http:// www.twitter.com/FamilyFund. 

 
Donate
Just Giving...

To Donate to Max Appeal is so easy.. Just click on the link below please.
http://www.maxappeal.org.uk/fundraising/donate
Information Ordering
PARENT/CARER & PROFESSIONAL CONSENSUS DOCUMENT
If you wish to order a copy of the parent/carer or professional consensus document, please use the link below.
http://www.maxappeal.org.uk/knowledge/consensus_document
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 info@maxappeal.org.uk
Thank you
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