The 22q11DS APPG is alomst complete.

Max Appeal has been working hard with Jack Lopresti MP to form an All-party Parliamentary Group for 22q11DS to raise awareness of the condition at the highest level, that is the government.

First meeting to plan the official Launch in March is Tuesday 2nd December with two more meetings.

Think your Mp might be interested in joining the fun?

Please send a letter by post or email asking them to join the APPG. A suggested form of words is available to download below.

If you don't know who your MP is then click on this link below and enter your post code in the box to find out.
Thank you so much!

Find your MP

Max Appeal Family Meet up - Somerset House - Skating - Saturday 6th December 2014

Max Appeal Family Meet up - Saturday 6th December.
Meet around 2-3pm
Somerset House.
Tracey Hennighan is kindly arranging this event.
Ice skating - 3-5pm
Please contact me if you would like tickets and we can check availability. Prices start from £7.50
/>steph@maxappeal.org.uk
Or book direct... http://www.somersethouse.org.uk/ice-rink/times-and-tickets
Or just go and meet up and watch some of our members fall over !!!
Then go for a bite to eat and a drink around Covent Garden.

http:www.somersethouse.org.ukice-rink

Massive IT kit donation

Huge thanks got to Tarquin Scadding-Hunt and colleagues at MD Events in Bracknell for the donation of computers, laptops and all the paraphernalia that goes with them.

This will be a great help, we will make the machines available for children to use at home and for families who struggle to keep in touch with the 22q and Max Appeal community
MD Events web site

All our places have been snapped up again!!

Get in quick next year if this iconic run "floats your boat"!

Celebrate Halloween with a Fright Hike, raising funds for Max Appeal.

Sign up on the links below.

Congratulations

Max, Leah and Dean visited the Train Driver Academy and Maintenance Depot at Hornsey hosted by the Training and Maintenance Teams, Govia Thameslink Railway.

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.

Have a Brew for 22Q!

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.

Whatever you need to make your event a success, give us a call or drop us an email, as we have loads of goodies to help your Max Appeal 'Have a brew for 22Q' go really well and help make money for Max Appeal.

Free Tea Party Pack

'Have a Brew' pack. Will include, 6 balloons, 6 cake toppers, A3 poster, bunting and money box.

To register your event and request your free pack;

Contact; steph@maxappeal.org.uk Please send your name contact / address.

Additional items to make your tea party even more special will be available to order soon.

Additional bunting and posters can be downloaded from our website.

If you would like the money box pdf, please email me at steph@maxappeal.org.uk.

12pm onwards
Stanbridge Road
Billington
Bedfordshire
LU7 9JH

Starts Saturday 22nd November - when else!

We are pulling together a whole week of suggestions for activities, twitter feeds and fundraising to raise awareness of 22q11DS and Max Appeal.

Watch this space...

Put 22q11 awareness week in your diary starting on 22nd of the 11th... geddit?

Second year of certification for Max Appeal!

It can't be said that it is easy to achieve and retain this quality mark for producing information that is appropriate, clear, accessible, accurate, balanced, evidence-based, referenced, user-tested and regularly reviewed.

Thank you to "Tessa The Assessor" from Royal Society of Public Health for help and perseverance.

We hope you think it's worth and that the NHS does too!

If you want to know more, please get in touch.

Afternoon Cream Tea in aid of Max Appeal at 3.30pm Methodist Church Main St Woodhouse Eaves.

As part of our Information Standard commitment to you we need your approval for this information leaflet to go ahead and be published.

Please view the cartoons and complete the on-line form.

Thank you.
on-line immunology cartoons approval form

Or you can complete a paper 'approval from' and post it to "Freepost Max Appeal" from within the UK. Please don't put any stamps on the envelope as the dear old post office get quite confused.

Thanks to all our runners and BIG thanks to Martin Silvester and all EC Harris for letting us use their lovely office in Baskerville House. It was great to meet up with everyone again.

Good luck to Jon Foster who is raising funds for 22q DS and Max Appeal by running in the Leicester Half Marathon.
Jon's fundraising efforts are going really well but if you can help him boost his target even more he would be delighted of your support.

Please donate to Jon's justgiving page;

https://www.justgiving.com/jonfoster81/

Good luck to all of the Max Appeal runners taking part!

Mead Open Farm 13th Sept 2014

Mead Open Farm - 22q Families Meetup.
13th September 2014
12pm onwards
Stanbridge Road
Billington
Bedfordshire
LU7 9JH
Further details to follow.

The Max Appeal Express continues to make more headlines up and down the country.

The Sunderland Echo writes about 22q Deletion Syndrome.
www.sunderlandecho.com/news/health/new-train-highlights-plight-of-sunderland-children-with-rare-condition-1-6775255

Open to young people with 22Q11DS, aged 13-22 years. A once in a lifetime opportunity to spend time at a train driving academy and gain practical experience on driving a train. The winner will be invited to take a train ride from Hornsey to Kings Cross where they will be in a cabin and see the train driving first hand.

TO ENTER: It's simple, take a photograph or a drawing of the Max Appeal train and say in a few words why you would like to work on the railway.
Then send to us at:
MAX APPEAL TRAIN COMPETITION, 15 MERIDEN AVENUE, STOURBRIDGE, WEST MIDLANDS, DY8 4QN.

REMEMBER TO INCLUDE: YOUR NAME, ADDRESS AND CONTACT NUMBER.

Deadline for entries is 30th September 2014 - Extended to 7th October 2014.

Proudly supported by First Capital Connect.

Murrayshalll Hotel & Golf Course in Perth

Monday 1 September from 09:30

Disabled people of any age or ability, and their coaches/carers, are invited to come along to this free session at the Murrayshall Hotel & Golf Course for some fun golf competition and tuition with PGA Professional RicharD Holt on Monday 1 September from 09:30.

This event, organised and funded by the SDGP, will be a 2-3 hour session, in which individuals can participate in as few or as many elements of the golf as they wish.

Anyone interested must register as soon as possible, as places have to be limited. Simply go to the Contact Us section of the SDGP website by clicking the link below.

SDGP - Contact Us

A general running programme of events will be as follows:

Session 1 - Putting. Location: Putting Green. Suitable for all participants. Description - 9-hole putting challenge. Players may hand in their lowest score.

Session 2 – 1 Hole challenge. Location - 1st Hole on the course. Description - Players are required to hit through a series of gates leading to the hole. A Point is rewarded for hitting through each gate and double points are rewarded for shots that fly through more than one gate. The gates will tempt the better players to be aggressive and allow less experienced players to capitalise with good strategy. This is suitable for moderately experienced players with or without handicaps.

Session 3 – Longest, Straightest and consistent drive challenge. Location - Golf hole or driving range. Description - Each player hits 10 shots to win either the longest or/and straightest drive. But, each of the 10 shots counts as overall consistency is measured as well. This is suitable for most players with or without handicaps.

Session 4 – Driving Range Skills Practise. Players can practise the full range of shots that can be expected during any normal round of golf. Specific shots will be set-up allowing players to hone their skills. This session also includes simple, non-technical, practise methods aimed at improving ball contact, direction, curvature and trajectory. This is a fun and relaxing way to develop the game. This is suitable for most players with or without handicaps.

Session 5 – Short Game Challenges. In a group of up to 12 players each individual player starts the game with 12 points. Each player chooses and marks the position of a single shot to defend their 12-points. Other players can steal points from the player on their marked position. The winner of the group is the player with the most points once each marked position is played from. This is a great fun way to play under pressure and sample the full variety of the short-game.

Session 6 - Mini-Golf. 6 Coloured Poles will be positioned in fair-to-difficult positions on the golf course. Players can play a 4-ball-texas scramble format for the lowest scores. Suitable for players with a handicap.

Fundraising for Max Appeal couldn't be simpler.

If you need any help to get started please email; info@maxappeal.org.uk

Train Launch and Awareness Campaign

A First Capital Connect train specially branded 'Max Appeal' was launched at a ceremony at King's Cross Station.

Mark Tripp, father of Adam, 8 years - the inspiration behind the campaign, drove the train and guests to Cambridge.

India Knight

Max Appeal Ambassador India Knight, medical specialists from London hospitals including Great Ormond Street and over thirty children affected by 22q DS attended the event.

We were delighted India dedicated her whole column in the Sunday Times to raising awareness of 22q DS.

India wrote;
" The story of how this train came to be is so cheering and unlifting."

She goes on to say, " It's about kindness, tenacity and how one little human can make a difference"...."You or I might sit on our bottoms going ''Oh dear''. Instead, Mark wondered how he could alert other people to the fact that this condition exists and that it not being diagnosed causes terrible anxiety, pain and suffering. A train, he thought, being a train driver. We should name a train after the charity - it's called Max Appeal, after Max, the late son of its two founders - that brilliantly supports the parents of children with this diagnosis>"

India, the children and their families were joined by Alastair Burt MP, Dr Liam Fox MP, and Keith Jipps, Customer Service Director at First Capital Connect.

Keith Jipps, Customer Service Director, at FCC says;

"Speaking to some of the parents and the children, I really got the sense of the struggle that most have been through, so it is such a warm feeling when you hear all the happy stories from the day and see the smiles on everyone's faces."

He goes on to say;

" The train and trip to the wildlife park would not have been possible without the dedication and hard work of Mark Tripp and we wanted to give Mark the support to make a difference"....."The reaction to the train has been massive with the VCFS 22Q11 Foundation in Australia calling it the 'biggest thing to happen in 22Q11 awareness' and the International Foundation in Philadelphia also featuring it. We are so delighted and proud to have played our part in giving 22Q11 the awareness that it needs."

Mark Tripp was able to tell Adam's story.

Mark said, " I talk to you all now as a proud railwayman, husband and father. My son Adam has 22q and due to the wonderful work by Max Appeal he is now getting the help he needs to thrive, for me personally today is about repaying that debt by raising awareness of a condition that affects 1 in 1800 births, around 35,000 children and adults, many of whom are undiagnosed."

Mark talks about finally receiving Adam's diagnosis, he says " When we were finally given Adam's diagnosis we felt relief and took comfort from the fact that we could move forward to help Adam tackle the challenges that lay ahead. We thought that most child care experts and medical staff would educate us about the syndrome, sadly this has not always been the case. Every time we attend another appointment outside the 22q teams it feels like the mental scars we carry are ripped open again. Please stop for a moment and image how our children, who are sat alongside us, must feel. They, after all, carry the mental and physical scars of 22q11 DS. Due to the efforts of First Capital Connect I hope this train will prevent other families going through the trauma we endured".

Mark's Message...

Mark gives us an insight into why this initiative is so important to him.

He says, " What drives me on as a parent and why am I so passionate about this initiative? When both my children were born I whispered the same thing to them, as they were obiously too young to remember, only I have known what I said until now. Adam and Zoe I made a promise that Daddy would be with you always, to guide and support you and to give you every chance in life. Well kids, this train is part of that promise!"

Not enough awareness of 22q DS

Keith Jibbs, Customer Service Director at FCC, talks about FCC's practical help;

" There is not enough awareness of this condition so by putting up posters around our network and making our latest refreshed Class 365 train a moving billboard for Max Appeal and 22q DS we hope to help raise that awareness."
www.railexpress.co.uk/news/fcc-class-365-has-max-appeal

Barry West is running in the Yorkshire Marathon and raising funds for Max Appeal.

Running in the Yorkshire Marathon

Barry is a colleague of Mark Tripp's at First Capital Connect.

He wanted to support Mark and help raise awareness of 22q DS, so he has 'stepped up' to run the Yorkshire Marathon for Max Appeal.

Please support him and sponsor him through his Justgiving page;
https://www.justgiving.com/Barry-West1/

Julie Wootton's selfie with Adam's poster.

Send a picture of your gang with Adam's poster and let us know the location.

Send to; info@maxappeal.org.uk

All aboard the Max Appeal Train!

Join us on the 25th July.

Sixto García-Miñaúr has worked very hard to bring this translation of the consensus document to you all!

Down load it from here of visit the Spanish group web site.

Spanish Support Group

Get together with Max Appeal members at Duthie Park, Aberdeen.

Struggling to nail down that revision??

Mary has put her top tips together, and having 22q herself she understands how tricky and daunting revision can be.

The South West Cleft service will be moving to Bristol Dental Hospital, University Hospitals Bristol NHS Foundation Trust, during the third week of
August.
Please contact Dr Julia Cadogan or Lesley Sanders on 0117 340 3998 if there are queries or concerns about this change.
Thank you very much on behalf of the 22q11 DS Service, Frenchay Hospital, North Bristol Trust.

Fun Beach Day on North Beach, Scarborough.

You can now text donate a fiver to Max Appeal!

Text 'Adam' to 70660
Adam is our poster boy on the First Capital Connect train the "Max Appeal Express" to be launched on 25th July...(thanks to Mark Tripp and FCC) and will appear on posters both on the train and platforms that the train visits.

Text 'Max' to 70660
Max is the general donation text and will appear on Max Appeal literature.

Good Afternoon Everyone,

Some of our brave colleagues at Mercure Hotels will be taking on this year's 3 peaks challenge!

For those who haven't heard, the 3 peaks challenge involves climbing the 3 highest peaks in the United Kingdom within 24 hours.

Focus Hotels have brought a team together to complete this challenge all in the name of charity.

give £s to these loonies!!

Congratulations to all those who took part.

If you missed out on the 2014 race then the ballot for 2015 will be open soon.

Please do get in touch if you would be prepared to run for Max Appeal.

Many thanks to our amazing runners in the 2014 race!

See Austin's story of his 2014 race and his motivation to take part.
More Information

Hi!

Saturday 26th April 2014

Calling all Max Appeal members!

Please do join us at the Glasshouse College in Stourbridge for our AGM and meeting.

We only have limited places available so it is essential to book your places if you wish to attend in person. To do this use the 'Contact Us' link below.

A full package of inforamtion for the event will be available shortly but we will commence at 10.00am.

To find out what we have been up to over the past year in terms of fundraising and expenditure please read the annual report.

If you would like a full set of accounts please get in touch and we will be delighted to send them to you by post. Please use the 'Contact Us' link below.

Voting by proxy

If you cannot attend the meeting in person you can vote by post or on-line:

AGM 2014 - on-line voting

If you have any issues or concerns, or would like further information, please use the 'Contact Us' link below: