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Max Appeal November 2015 
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Max Appeal E-Zine
November 2015
Events, News & Information
Dear Max Appeal members, welcome to your November 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.

22nd November - 22/11 - 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
  • Research & News
  • Donate
  • How to order Consensus documents
  • Change of contact details
IMPORTANT NEWS!!!
SAVE THE DATE
5th December 2015
22q11 DS Parent Conference

The programme is being finalised for this year'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.
Booking details will be through the Max Appeal website.

Read more:  https://www.maxappeal.org.uk
/news/content.asp?ni=276
Forthcoming events and Fundraising ideas
Morrisons Great Birmingham Run 
18th October 2015
 
Paul Wootton is doing a triple challenge, ie three half marathons, this year; he's done the Dublin Rock and Roll, Great North (for the 14th time!!) and will take part in the Birmingham Half marathon in October with beer and curry afterwards with the rest of Max Appeal's athletic, rugged and tenacious runners. 
If anyone would like to sponsor him please do see his Virgin Money Giving
http://uk.virginmoneygiving.com
/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=PaulandJulieWootton
Bristol to Bath Marathon
25th October 2015
 
This brand new marathon for the South West, begins in Bristol, the vibrant city of Bridges, Brunel and Banksy, through the stunning South Gloucestershire countryside, ending victoriously in the elegant Roman Spa city of Bath. 
Step up the pace and make history as you run city to city in the inaugural Bristol + Bath. 

Run for Max Appeal. 
Entries now open. 
Email Paul@maxappeal.org.uk and confirm your entry. 
Read More https://www.maxappeal.org.uk
/events/content.asp?ms=5&ei=119

 
Family Day out at Lotherton Hall
28th October 2015
 
Organised by one of our Max Appeal Trustees - Martin Kennedy 
After the success of this year's beach day I'd like to organise another family day at Lotherton Hall near Leeds. There is a nice walk around the grounds, good cafe type place in a courtyard, the bird garden has all sorts of birds to look at and there are a couple of decent playgrounds for the kids. Will post more details nearer the time.
Read more:  https://www.maxappeal.org.uk
/events/content.asp?ms=5&ei=155
 
Thinking of running for Max Appeal?

Sign up and run for Max Appeal.
We will support you with fundraising help and especially branded running vests.
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.
Have a Brew for 22Q!
22/11
22q11 DS Awareness Day. Hold your own "Have a brew for 22q" Event.

 
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
A big Max Appeal Thank you to....
Kayleigh Michelle Bentley Equinox 24

 

The weekend of 12th September Kayleigh took Max Appeal to Belvoir castle and took part in Equinox24. 

This is a 24 hour relay race, each lap of this hilly cross country course is 10k, she was part of a team and 5 of them covered 30 k each the other 2 covered 20k. Kayleigh ran in the pitch black of the night ( 2nd lap started at 00:35) and promoted max appeal the whole way round as so many people asked questions about it. 

Read More: https://www.maxappeal.
org.uk/fundraising/a_great_big_thank_you.......
Family Fun Day Organised by Emma Wilkins 
26th September 2015

 
Emma organised a fantastic family fun day with all monies raised donated to Max Appeal. 
Over 400 people came and over £500 was raised. 
They had a funfair, candy floss, popcorn, carts, assault course, bouncy castles, raffles and tombolo. A bar and burger vans. 
Thank you so much Emma for all of your time and effort arranging this wonderful day.
Read More: https://www.maxappeal.org.uk
/fundraising/a_great_big_thank_you.......
Studio 3 Dance Workshop Show 
 
Thank you so much for your support
Studio 3 Dance Workshop put on a show on the 19th September and all funds are being donated to Max Appeal. They raised an amazing £174.00. 

In support of a little girl who has the condition 22q11 deletion called Leah Wilkins who lives in Knaresborough. 

Read more:  https://www.maxappeal.org.uk
/fundraising/a_great_big_thank_you.......
Simon Lonsdale gruelling half marathon in the Middle East

 

One of our members, Simon Lonsdale who helps run the youth camps for Max Appeal, has run a gruelling marathon

Read More  https://www.maxappeal.org.uk/news/content.asp?ni=270&adminaction=edit 

 
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.
Research & News
Independent Newspaper 18th September 2015
 

 

Did you see Max Appeal in the national press?
 The Independent Genetics Disorders supplement carried this publicity advert as part of the jeans for Genes day. 

As we know awareness is vital to ensure that people with 22q11DS get the services and help they need.
Paediatric Intensive Care (PICS) Society Annual Meeting 15th September 2015
 
The 29th September Paediatric Intensive Care  (PICS) Society Annual Meeting 2015 was held at the The International Convention Centre in Birmingham in September. Max Appeal was one of only a few charities invited to have a stand at the conference (free of charge!). It was a great opportunity to display information about 22q11 DS and let professionals know about our work. It's great to hear some fantastic comments about the information Max Appeal provides especially the Consensus Document
Jeans for Genes
18th September, Max Appeal was one of this year's Jean's for Genes Day charities. It gave us the opportunity to get some national coverage in media for 22q11 DS in our journey to raise better awareness of the condition. Funding from Genetic Disorders Uk have enabled us to organise this year's parent conference on Saturday 5th December at Cardiff University.

 
 
What care and support is available for those with 22q11 DS
 
 
Brussels 10th & 11th October 2015 Relais 22 European Conference

Relais 22 hosted a European Conference in Brussels 10-11 October. Leading clinicians expert in the management of 22q11 DS were there to discuss many aspects of the condition. It was a great opportunity for parent groups to work together across Europe and plan how they can have a bigger voice in raising awareness of 22q11 DS at a European level.  

Read More:  https://www.maxappeal.org.uk
/news/content.asp?ni=278
 
Max Appeal at the UK PIN Conference
 
Hilary Joyce will be representing Max Appeal at the UK PIN conference as they welcome delegates to this year's Annual Meeting in Belfast.  The conference provides a platform for discussing the latest clinical management and research in primary immunodeficiency. It offers Max Appeal another opportunity to share our information with professionals and raise awareness of 22q11 DS.

 
Check out Amy Maiorana You Tube Video
Does 22q in the style of Taylor Swift's 22

 

 

Amazing music video by Amy Maiorano doing 22q in the style of Taylor Swift's 22. 

 
Max Appeal Calendar & Wall Planners 2016 Photo's please.
It's that time of year again !!! 

Can we ask for you to send in your photo's of your 22q cuties please. 
We need a minimum of 1MB in size please. Lifting off facebook is no good because the resolution is not of printable quality. Email jpegs (or any other type of picture file), but don't embed in a document or an email. 
CLOSING DATE:  30th October 2015
Read More: https://www.maxappeal.org.uk
/news/content.asp?ni=275

 
Max Appeal Christmas Card Competition
Well you probably don't want to be reminded, but it's only 10 weeks to Christmas!

We would like to offer some new Christmas Card designs for the coming festive season.
Can you help.... if you would like to enter a festive design which could be chosen as part of the Max Appeal 2016 Christmas Card series please produce your design on an A4 sheet of paper and put your name, competition group and contact details on the back of the picture. Please send to Freepost Max Appeal. Extended closing date to 15th November 2015.
The competition groups are;
Group A - Up to 11 years
Group B -  12 -17 years
Group C  - 18 years and over
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
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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