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Max Appeal January 2016
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Max Appeal E-Zine
January 2016
Events, News & Information
Dear Max Appeal members, HAPPY NEW YEAR & welcome to your first 2016 newsletter.  
We hope you enjoy seeing what events and fundraisers are coming up in January and what has been happening in the last couple of months.

We also  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.
  • Max Appeal 2015 22q11DS Parent conference 
  • Forthcoming events & fundraisers in January
  • Thank you
  • Achievements
  • Research & News
  • Donate
  • How to order Consensus documents
  • Change of contact details
22q11 DS Parent Conference
5th December 2015

Max Appeal's parent conference for 22q11 Syndrome at Cardiff University
We had 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.

Click here for full story:
https://www.maxappeal.org.uk
/news/content.asp?ni=309
Forthcoming events and Fundraising ideas
Max Appeal and members are having a quiet January to get over all the Christmas Pud!

There are no events planned for January at present.
 
Please get in touch with us at info@maxappeal.org.uk if you would like a "have a brew for 22q" pack or have any exciting events and fundraisers planned.  
We can help support your event with posters, balloons and goodies.  We will also help by promoting on our webpage, ezine and facebook pages.
Have a Brew for 22Q!
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
A big Max Appeal Thank you to....

Thank you so Much Louise Henderson for your "Have a Brew for 22Q"
Lovely note from Louise who raised a whopping £227. 

Super chuffed to report that I raised £227!! Thanks to everyone who has donated and thanks to everyone who posted their brew photos!. And super chuffed Sarah won the Christmas cake raffle. I love you all, thanks for all the encouragement and support xx

 
Have a Brew at the Tripps
21st November 2015
That's a fantastic looking table of cakes. 
Thank you for raising a wonderful £263 at your Have a Brew for 22q. 
Cheers.
 
 
Massive Thank you to Carol Tripp for holding a Have A Brew in Cyprus

Over £100 raised for Max Appeal. 
The first international "Have a Brew for 22Q" event. 
Full story please click link. 
https://www.maxappeal.org.uk/
news/content.asp?ni=292
 
Zumbathon - What a great way to raise funds for Max Appeal
Thank you to Kirsty Yeung for raising over £600. 

Recently I took part in a 2 hour zumbathon on 21/11/2015 in Galashiels in the Scottish Borders to raise money for Max Appeal. My daughter has 22q and my mother helped to arrange this event. The zumba instructor will send through the final donation when all counted. So far I'm aware that it is over £600. Here are just a couple of photos from the day. A great morning for a great cause. 

 
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
Research & News
22Q11 DS APPG
8th December 2015


Professor Peter Scambler , Professor of Molecular Medicine, ICH Development Bio & Cancer Programme, Institute of Child Health, Faculty of Pop Health Sciences, joined us for the APPG meeting as our guest speaker. He shared many aspects of his presentation which he made a Cardiff University at the Max Appeal conference with the MP’s who attended.
 
Please see website for more information
https://www.maxappeal.org.uk/news/content.asp?ni=310
Please do think about asking your Mp to join future APPG.
 
Max Appeal Christmas Cards
Now Available to buy 
Please click link to see details to purchase:
https://www.maxappeal.org.uk
/fundraising/shop/content.asp?s=49&p=104
.

A HUGE THANK YOU TO Nigel at Tulleys Print, for providing the Max Appeal Christmas cards for no charge.
http://www.tulleysprint.co.uk

 
UK-PIN Meeting in Belfast November 2015
 
Hilary Joyce one of Max Appeals Trustees, attending the UK PIN Meeting
The UK-Primary Immunodeficiency Network Meeting is held every two years and is the main forum for presenting research and information in the UK. Once again MaxAppeal had a stand to promote our work and raise awareness of the 22q11DS among the clinicians and nurses attending.
For the full story, please click on this link
http://www.maxappeal.org.uk
/news/content.asp?ni=302
Introducing Mark Tripp, Max Appeal's newest Trustree
 
How I became hooked on Max Appeal.
As a family we found Max Appeal on the day that Adam was formally diagnosed with 22q11 ds, thankfully Google was kind to us that day as we typed 22q11 into a search engine..

For Mark's full story please click on the link below:
http://www.maxappeal.org.uk/news/content.asp?ni=296
Please welcome Julie Jones to the Max Appeal Admin office.
 
To read Julie's introduction, please click on the link below. 
https://www.maxappeal.org.uk
/news/content.asp?ni=307

 
British Sub Aqua Club.
Fancy a go at Scuba Diving ??
One of our members has offered to give you a free scuba diving lesson: 
Please click link for more details
https://www.maxappeal.org.uk
/news/content.asp?ni=308

 
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
Volunteers Wanted
100,000 Genomes Project
I am a researcher from Oxford University looking for people to take part in the 100,000 Genomes Project. 

The 100,000 Genomes project funded by the Department of Health will sequence 100,000 genomes from around 70,000 people. Participants are NHS patients with a rare disease, plus their families, and patients with cancer.
For further information, please click the link:
https://www.maxappeal.org.uk
/news/content.asp?ni=304
 

 
Donate
Just Giving...

To Donate to Max Appeal is so easy.. Just text MAX to 70660 to donate £5. 
You can also donate via JustGiving here:
http://www.maxappeal.org.uk/fundraising/donate
Donating with Payroll Giving is a simple and easy way to give to Max Appeal from your salary

A donation to Max Appeal each pay day will help us continue our work supporting children and their families affected by 22q11 Syndrome

See how giving as you earn works 
Your pledge... Cost to you at 20% tax rate Cost to you at 40% tax rate
£5 £4 £3
£10 £8 £6
£20 £16 £12

For more information, please click on this link:  http://www.maxappeal.org.uk/news/content.asp?ni=303
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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