Enjoy a fun day on Scarborough Beach.

Head Teacher's Award Nomination

We were so pleased to here from Leah who is celebrating her final year at Roundswood Park School.

Leah proudly received an award for achievement from Mr Henshall her Headteacher.

School is challenging for many young people affected by 22q DS.

More about the Head Teacher's award

The Head Teacher's Award is given for services to the school. As such, it is a very difficult award to allocate. So many people, including most of the people in this room, have given so much more to this community than simply their time in lessons. We have heard of many sporting and academic successes, many of which were achieved by giving up time to help and volunteer outside the classroom.
The person receiving this year's award is a credit to all of us because she brightens up all of our days.
Those of you who have seen my open evening speeches know that I like my quotes, my doorstepping of our staff, students and governors to glean their views. I asked what they wanted to say about this person, what their thoughts were about her. These are the responses: -
• 'She's a determined young lady'
• 'She always sees the best in things'
• 'I've never seen her miserable, ever!'
• 'She's a great friend to others. She's brought her friendship group closer together and is really caring'
• 'She's determined to succeed: Her swimming this year has really come on, as has her school work generally.'
• 'No matter what she comes up against, she always overcomes it with a smile on her face.'

22q Deletion Syndrome

Before I give you a couple more quotes, let me tell you a little bit more about her:

She was born with 22q11 Deletion Syndrome.

Have you heard of this? The chances are you won't have yet, but you will have in the near future. This is thanks in no small part to our award winner and her family who have given their time and energy campaigning for a recognition of this condition and raising society's awareness of it.

This campaign culminated in a trip to the House of Commons in May along with the charity Max Appeal.org – to speak to a group of MPs about the condition. The confidence which she showed in this arena impressed everyone who was there and shows just how much she has developed as a person.

22q11 deletion syndrome basically could have given Leah a lot to complain about in life, and has made learning more difficult for her than most of us. But, far from complaining, she approaches life with a sunny disposition and a positive attitude.
As one of my colleagues said to me last week:
• 'She is an example to each and every one of us in the way she approaches life.'

The winner of the Head Teachers Award for 2013 is someone I will miss very much next year,
Leah.

Share your achievements

We send loads of good wishes to Leah for her challenges in her new school year.

Let us know about your celebrations and achievements by emailing info@maxappeal.org.uk

Jason Allan is a Max Appeal hard man!
Here are some of the facts of the week that he let us know about:
* 987 miles covered.
* 72 hours and 40 minutes on the bike.
* 59,000 feet climbed.
* 400,000 pedal turns.
* 60,000 calories burned.

Jason goes on to report:


I completed the ride (on 16th June) and it was the most enjoyable nine days I have ever experienced. With challenging climbs and enjoyable descents, fantastic organisation at all the base camps each day it all made for a brilliant experience. Everything was fine, both physically and mechanically and I did not even get a single puncture!

From all of us at Max Appeal THANK YOU for you fabulous fundraising efforts.

(ed. note to self: never go bike riding with Jason Allan and his friends; they're blokes not to be messed about!)

Max Lechner's life tragically ended when he was 11years old in December 2011. But Max is not the sort of boy who is easily forgotten and his Aunty Nicky has written a fabulous and uplifting story in tribute to this engaging, happy and bubbly boy.

Come to the book launch at Kippie Lodge near Aberdeen, one of Max's favourite places, and enjoy hot dogs and refreshments!

Max Appeal has a number of places in the Great North Run and Birmingham Half Marathon.

We need to fill all of the places to help raise much needed funds for Max Appeal so please put any family, friends, neighbours or work mates in touch with us.

Further details are on the website and you can email Paul Wootton, on; paul@maxappeal.org.uk. Paul will guide you through registration.

If there is an organised event near you and you would like to take part and raise funds for Max Appeal we would love to hear from you.

We can supply you with a Max Appeal running shirt and support with fundraising.

Fundraisers from Derby embark on 2500 mile journey.

Two fundraisers from Derby are embarking on a 2,500 mile journey in a banger to raise money for charity.


David Reeves (24) and Mark Sandercock (39), from Sinfin, will be taking part in a once in a lifetime event which will see them drive along some of the locations used in the original The Italian Job film.

MX 5

The pair have bought a 1989 MX-5 worth less than £500 to take part in the Crumball Rally, leaving Derby on Thursday 6th June, in an attempt to raise money for Max Appeal.



David said 'Max Appeal have done a lot to support my niece, Laura (13), and the family for a number of years, and this is our way of saying thank you for their great work'

Laura was first diagnosed with 22q11 when she was four years old after years of battling with the NHS. Her mother, Lisa, was a young mum with her first child and was often labelled as a neurotic mother after visiting health professionals with concerns for her daughter. When Laura was eventually diagnosed the work to support her health could start.


'The biggest challenge, by far, is supporting Laura's social interaction and confidence, which Max Appeal have been influential in'

David added 'We are going dressed as MX-5icans on the self-funded trip, so every penny that's donated will go to Max Appeal.'

Justgiving

The pair leave Derby on Laura's 14th Birthday. If you'd like to sponsor David and Mark, or leave a gift in lieu of Laura's Birthday, please visit www.facebook.com/crumballrallyformaxappeal or www.justgiving.com/crumballrally2013

Max Appeal has secured 25 guaranteed charity places in the Great Birmingham Run on 20th October respectively.

Max Appeal has secured 25 guaranteed charity places in the Great North Run. Entry fee is £49.00. You can secure a place by completing the entry form attached and returning either via e-mail or posting to'Freepost Max Appeal'. Entry fees can be paid via cheque made payable to 'Max Appeal' or direct to our bank at CAF Bank, sort code 40-52-40, account number 00016137.

Another challenge... but in a beautiful setting! Enjoying the view will make you feel less out of breat... no really!

We're all set for a wonderful time at Cranham Scout Centre in Gloucester this weekend...

the weather is all set to be blazing hot and generally glorious. That means that everyone will enjoy the BBQ on Saturday night.

Simon has got a fabulous line up of activities... watch this space for how it all goes!

Max Appeal members Caroline and Lucina took part in the BBC Radio 4 Woman's Hour programme.

Caroline spoke about the difficulties in getting a diagnosis of 22q DS.

Many parents share the same concerns.

We hope the Consensus Document will help to raise awareness of the condition, 22q DS.
www.bbc.co.uk/programmes/b01sj1st

Institute of Psychiatry are looking for willing volunteers for their brain study. Clodagh Murphy is a name that some of you will recognise, she is a big supporter of Max Appeal and keen as mustard on 22q. Advancing studies is an important way to improve knoweldge of the condition, so please do sign up if you can. Thank you!

Click on the image to make it appear in full size.

Mark Tripp has been working hard to ensure lots of people have heard about 22q DS.

Mark came along to the House of Commons launch in April and he is in touch with his MP, Alistair Burt who has also become familiar with the problems many parents encounter when accessing support for their child.

Mark has just completed an interview with his local paper, again highlighting our new Consensus Document.

Here is the link to access it;

Mark Tripp in Biggleswade Today

3rd International 22q Awareness Day success

Around 300 people enjoyed a great awareness day at their nearest venue, and there were 7 of those around the UK for Max Appeal.

It was really great to see loads of red t-shirts, red badges saying "Ask me about 22q" and the zebra toys at our zoo... and we're really looking forward to making next years even bigger.

Pictures will be in the next newsletter.

Max Appeal launch of the UK National Consensus for 22q deletion at House of Commons 15th April 2013.. what a great event.

Loads of THANK YOUs; first off: Margot James MP for Stourbridge for sponsoring the Max Appeal event, she is a great supporter of Max Appeal!

then our professional speakers:

The wonderful and incredibly popular paediatrician Alex Habel from Great Ormond Street Hospital, who has done so much to improve the quality of life for people with 22q since he began the specialist GOS clinic in 1998.

Donna McDonald-McGinn from Children's Hospital of Philadelphia. Director of clinical genetics and founder of the International 22q Foundation... initiator of the international awreness day "22q at the zoo" and generally an all round good egg.

most importantly our 22q speakers:

Sarah Ryan, ably assisted by super-husband Chris. Sarah and Chris spoke about how they have overcome issues with their daughter and the difficulties faced by women who have to condition, have children with and/or without the condition and who try to juggle a working life as well.

Tracey Muschamp, who is a star in her own right. Tracey is a single mum with two grown up daughters who all have 22q deletion. Tracey is a fabulous role model for all 22q parents; she works hard and plays hard. She is a popular member of her community both in fundraising and socially, she is also a great Mum.

We were able to thank some of our top fundraisers with glass trophies:

Grateful thanks to Martin Silvester, Ed Coppinger and Mark Bradbury.

It was also good to see our new charity of the year supporters Squire Sanders solicitors in Birmingham who shared the day with us. The plain fact is that without these vitally important people Max Appeal just couldn't do half the work it does!

This was a wonderful event with a brilliant turn out and it was great to see so many of the medics from within the UK who contributed to the Consensus Document and from overseas with whom Max Appeal collaborates on many international issues.

BUT the stars of the show are the families. The parents, wives, husbands, children, grandparents and carers truly made this an emotional and key event in Max Appeal's history.

Great day for all of us, Max Appeal is so lucky to be able to support such a fabulous bunch of people. Keep the momentum going! Bring it on!

It was a great turn-out for our House of Commons launch of the Consensus Document. Over eighty guests attended the official launch in grand surroundings on Monday 15 April. The publication of this important document marks a turning point for 22q11. This important document will now set a standard that can be applied to the diagnosis and management of people with the condition.

The event was hosted by Margot James, MP, who spoke alongside medical experts Dr Alex Habel, who established the longest running 22q11 clinic at Great Ormond Street Hospital and Dr Donna McDonald-McGinn, Director of Genetics at the Children's Hospital of Philadelphia.

These key speakers were joined by mothers Tracey Muschamp and Sarah Ryan who both look after children and young adults with 22q11 as well as living with the condition themselves. Tracey and Sarah stood up for other people with 22q11 and spoke brilliantly about their life and struggles with the condition. They really were inspirational. The Max Appeal is so grateful for their support along with all other speakers.

Feedback on the event has been overwhelmingly positive and we now want to capitalise on it. Now it's your turn - please do spread the word far and wide!

Write and tell us about your experiences of sharing the Consensus Document with your local teams, - we'd love to hear from you, email; info@maxappeal.org.uk

These conditions affect health and quality of life from birth through infancy and childhood into adult life with over 180 physical, functional and psychological associations reported. The complexity of 22q11 frequently leads to clinical confusion and a delay in diagnosis often by years partly due to specialists failing to appreciate a genetic link between disparate disabilities.

This Consensus Document is a comprehensive, practical and accessible information resource which has been created by a team of over fifty national experts working in the major clinical fields associated with 22q11 deletion.

Dr Alex Habel, retired Consultant Paediatrician at Great Ormond Street Hospital, says 'The number of affected individuals in the UK with 22q11 is growing and with help to manage their disabilities many are becoming parents adding to the pool of those in need. This Consensus Document will be of huge benefit to all patients and families and those who provide care and support to them.'

Julie Wootton, chair of trustees, Max Appeal, says:
' We are delighted to be launching landmark document that will start to bring improvement to the care offered to people with this condition that is currently patchy at best. There is now a benchmark for families, clinicians and other service providers to work to. It is now Max Appeal's job to roll the consensus out across the country so that lack of awareness will not be a reasonable excuse for failure to provide adequate and appropriate care.'

4-6pm on Monday 15th April 2013

Come and joins us or spread the word! Official invitations are needed for entry and we have 80 places... so get in quick if you want to enjoy a little tipple, some lovely cucumber sandwiches (no crusts, of course!), and othter delightful nibbles.

Serious point is that this is an important milestone for Max Appeal so your help in raising awareness of 22q deletion is vital.. help us make a mark in westminster!

Got a smartphone?

This was a deffo "must have" for us... though it seems a bit daft putting it up on the web site really, when the object of a qr code is that people 'scan' them (and you'll need an app for that!) with their smartphone which then directs their phone browser automatically to that web site. So clever isn't it?

Doesn't it look lovely?

Ofcom recently made a new set of pre-fix telephone numbers available for public bodies and not-for-profit organisations ie charities, so you know when you see the number begining with 0300 it is genuine.

We have been able to obtain 0300 (charity Pre-fix) 999 (help) 2211 (twenty two one one) for Max Appeal.

The other benefit to you is that it charged at standard call rates, so are covered if you have a call package with your mobile phone compnay, whereas 0800 numbers are premium for mobiles.

We think this is pretty cool!

Great Quiz Night at Clent Village Hall, nr Stourbridge in Worcestershire. The Farmer family organised this event for Max Appeal as their son, Tom aged 3 years, has recently been diagnosed with 22q deletion.

This amazing family have raised a whopping amount of cash for Max Appeal... and we had a really good evening too, might have come second if we'd listened to the youngest Max Appeal team member!

Thank you!!

Sign up today

Why not enter now for the British 10k run on Sunday 14th July.

You even get access to online personal coaching from now through to race day, at no extra cost.

It's a great way to raise funds for Max Appeal.

Full details on the link below.
www.thebritish10klondon.co.uk/

Wall Calendars

The new wall calendars are great!

If you need some additional ones, just contact us; info@maxappeal.org.uk

We would love to here from you with any new ideas to support Max Appeal.