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Max Appeal! is a UK registered charity supporting families affected by DiGeorge syndrome, VCFS and 22q11.2 deletion

"...we were lucky. We had 115 days with Max, and saw him smile, and know who he was, and we learned about ourselves and the people around us..."


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Genetic Disorders UK - Jeans for Genes Day - October 2015

Forthcoming Events

Latest News

  • The annual conference of the British Association of Community Child Health 2017
    Image: bacch_2017_thumb.jpgIt's always useful to raise awareness about 22q11 Deletion Syndrome and ensure professionals are aware of Max Appeal and our information. The annual conference of the British Association of Community Child Health is always a good place for Max Appeal to have a presence as there are around 200 community based paediatricians and other professionals in attendance. This year, the two day conference was held at Southampton Solent University. Sally Fysh, Max Appeal member came along to help out and ensure all those at the conference knew about the Consensus Document for 22q11 DS. It was good to hear from many of the professionals and to know they have 22q11 DS families accessing their service. Most of the information booklets and other Max Appeal goodies were handed out.. always a good way to ensure 22q11 DS remains on the radar.

  • Max Appeal Family Fun Day on Scarborough Beach, 2017
    Image: img_2042_thumb.jpgThe annual Max Appeal Day on the Beach family meet up on Scarborough beach took place on Sunday 13th. This is the sixth time we have organised this family meet up and once again it proved to be a wonderful day with new and old faces attending the event. Year on year this event proves it's worth for us all together and catch up.....see everyone next year!"

  • Patient Support Event 22q Family Day, Saturday 30 September 2017
    Image: 20914607_10155351916205791_8678657229772331318_n_thumb.jpgOrganised and run by Glasgow Royal Hospital for Children Seminar Room 1 Laboratory Medicine Building Entrance opposite the Royal Childrens Hospital - Glasgow 11am - 3pm

  • THE 22q11 EUROPE 2nd ALLIANCE MEETING, Saturday 7th & Sunday 08 October 2017
    Image: alliance_mtg_thumb.jpgINFORMATION ON THE 22q11 EUROPE 2nd ALLIANCE MEETING WHERE This meeting will be held in the Edmund Burke Theatre of the Arts Block in Trinity College, Dublin on Saturday the 7th and Sunday the 8th of October 2017.

  • Max Appeal Family Meet Up At Normanby Hall, Sunday 15 October 2017
    Image: carousel-house-and-grounds-960x293_thumb.jpgEveryone is welcome and it would be lovely to see you there.

  • The IAAF World Championships
    Image: dan_nuttall_thumb.jpgI am so very glad that I saw your post about the tickets for the athletics. I called Dan straight away and asked him to apply. He didn't think that we would get them and to be honest neither did I. He was very excited when we got the e mail to say that we had been successful!

  • A Parents Perspective - Three Peaks & Waddecar Camping
    Image: ss54334660_thumb.jpgWhen Mark asked if I would do the 3 peaks challenge again I didn't hesitate to say yes, although this year I dragged my poor husband along. It's not just about raising funds or awareness for us, but a personal individual challenge. Our children face challenges on a daily basis, from the moment Jack was born he's been prodded poked and undergone surgery that was life threatening, but always ...always put up with everything and comes through smiling at the other end, and all of you with 22q children know that every day the simplest of things for us can be the most difficult for them. So the day came, 22/07/2017 and very very wet! But we started well and the great thing was, we were all there for the same reason, we all love somebody with 22q, we were all prepared to push ourselves 26 miles and 5500 feet, and that's what we did.

  • Supporting Families Poster
    Image: picture175793960_thumb.pngWe have a double sided A4 poster available for you to pass to your local health service providers, to help raise awareness. Please complete the attached order form to arrange for us to post one out to you.

  • Cranham Youth Camp Max Appeal 2017.
    Image: artwork_thumb.jpgIt was that time of year again for new and old campers to meet up at Cranham Scout camp in Gloucester. We had a full and varied programme planned for the weekend with plenty of willing helpers to ensure everything went smoothly and to ensure the children and young people attending had a fun time. As usual the weather was kind to us and it was lovely to spend most of the weekend outside enjoying the peaceful surroundings. The children enjoyed many of the regular activities, including archery, riffles, bush craft, grass sledging, climbing, the challenge course and dam building as well trying out some new things. This year we welcomed local artist Julie Kingscott who held a relaxing and inspiring art session. The outputs from the children were amazing.

  • Max Appeal supporting Jeans for Genes Day Friday 22nd September 2017
    Image: 2_thumb.pngThis year Max Appeal is one of Genetic Disorders UK partner charities. This means we will be sharing in their new 50/50 income share scheme for the 2017 Jeans for Genes Day. Max Appeal will be also benefiting from a Jeans for Genes Day grant to help support our youth activity weekends. This is what you can do to help support the national fund raising day, Jeans for Genes. If you can persuade your child's school or your place of work to participate in this year's Jeans for Genes day (and providing they have not held a fundraising event for Jeans for Genes Day for the past 3 years, - 2014, 2015 or 2016. If they have done, the school cannot be recruited as part of this scheme). Both Max Appeal and Genetic Disorders UK can equally benefit from any monies raised, - 50/ 50!

  • Mazda
    mazdaMax Appeal are delighted to announce that we have been chosen to be one of Mazda UK's charity partners. Trustee Mark Tripp recently attended Mazda head office alongside representatives of the Charities Grief Encounter and Emelia's Little Heart where he heard about the first of their fund raisers by one of Mazda's long term partners Cox Automotive. Max Appeal thank all those involved at Mazda who helped us get this exciting and unique opportunity. This is exciting news for all at Max Appeal and we look forward to working alongside Mazda to help raise our profile and create awareness of the work we do within the world of 22q11. Keep and eye out for upcoming events and if your in the market for a new car then why not start with a trip to your local Mazda Dealer first.

  • MG Owners Club Wolds Way Rally 14th May 2017
    Image: 362386720_thumb.jpgAll, On Sunday 14th May a small band of Max Appeal supporters met at the BBC building in Hull City Centre. We were there to see the start of the MG Owners club Wolds Way rally curtesy of Geoff and Christine Kirk. The day was amazing for all that attended, not only were we warmly welcomed by the rally participants but we also managed to visit a local museum and the fabulous Deep Aquarium. We also managed to get mentions on both BBC local news and on BBC look North radio so helped spread the word about Max Appeal and 22q11. With out doubt the highlight of the day was Geoff arranging for our children and teens to take rides around town in this fascinating cars. We at Max Appeal thank both Geoff and Christine and their family for a fabulous day and for helping to raise over £300 for Max Appeal via a charity raffle. We look forward to hopefully making this an annual meet up for our North East members. It was especially nice to see their son Richard taking part in the rally and showing that 22q11 isn't holding him back. Finally I finish by attaching a thank you letter sent to the MG club which was published on their website http://mgccyorkshire.co.uk/gallerys-reviews/ Mark Tripp Trustee

  • Max Appeal Family Day Out In York, Sunday 24 September 2017
    Image: train_thumb.jpgSue Colley will be hosting a family day out in York on Sunday 24th September.

  • NHS England Proposals for Congenital Heart Disease Services
    NHS EnglandIn July 2016, NHS England published a set of proposals regarding the future commissioning of congenital heart disease (CHD) services for children and adults. They describe the actions which NHS England propose to take in order to ensure a consistent standard of care for CHD patients across the country, for now and for the future. NHS England propose to do this by implementing national service standards at every hospital that provides CHD services. The effect of their proposals, if implemented, will be that some hospitals will carry out more CHD surgery and catheter procedures, while others, which do not meet the relevant standards, will stop doing this work. The aim of their public consultation is to provide you with information about their proposals, and the potential impact they may have, if implemented, on the delivery of services, and to seek your views about their plans. 

  • 22q at the zoo 2017
    Image: 3_zoo_thumb.pngOn Sunday 21st May 2017 around the world the 22q11 Deletion Syndrome community came together to Raise Awareness of this little known Syndrome also known as Di George Syndrome and Velo Cardio Facial Syndrome by holding a get together for families to meet others who have a family member or members with this genetic syndrome This was the 7th year this event at a designated Zoo has been held Here in the U.K. 3 main Zoo venues were chosen, ZSL London Zoo, Chester Zoo, and Edinburgh Zoo were chosen by Max Appeal the only U.K. charity that supports sufferers and their families with this Syndrome Chris and Sarah Ryan again were able to host this year and hosted at ZSL London Zoo, Chris' Company, Link2Connect helped to sponsor ZSL London Zoo along with Max Appeal to offer reduced prices at the U.K Zoo's Chris, along with Sarah and Leah who both have 22q11 Deletion Syndrome were at ZSL London Zoo to welcome families who enjoyed a great day out and then meeting at lunchtime for a chat and a group photo, we welcomed 160 people to this event (reported by Chris & Sarah Ryan - Thank you) Photo - Chester, Edinburgh and ZSL

  • Latest Research findings released from the ECHO study Cardiff University
    Cardiff University ECHONew information from Cardiff University's ECHO study was released on the 12th June, 2017. See a summary of the findings on the link attached.

  • Who Knew About 22q?
    who knewWho Knew About 22Q? A documentary short about a condition that many people have never heard of; 22Q11.2 Deletion Syndrome. It is now thought to be as common as Downs Syndrome with more than 1 in 2000 babies estimated to be born with it. Yet many people have never even heard of it. I went on a journey to meet and speak to people living with the condition and gain an insight it to what it's like living with one of the most common unheard of genetic conditions. Produced, filmed and edited by © Jade Vowles.

  • Stoke V Hull
    22q goes Premier LeagueFollowing fast on the heels of the day with West Bromwich Albion we were notified that Max Appeal had been granted a unique opportunity to have our name emblazoned around Stoke City's ground for their premier league home game against Hull on Saturday 15th April. With bated breath, we tuned into Sky Sports and Match of day to witness the name of Max Appeal and 22q11 being shown to an audience of millions. We are hugely grateful to the team at Project 11 who donated the advertising to us so that we can continue to help raise awareness of 22q11 Deletion Syndrome. To see our name scrolling across the advertising hoardings was a dream come true and attached are a few screen shots that prove we really did make it into the premier league.

  • Boing Boing Baggies Baggies
    Image: jamie_and_james_morrison_with_a_max_appeal_selfie3407849_thumb.jpgOn the 12th April four lucky Max Appeal families were invited to take part in a special fans day hosted by our friends at West Bromwich Albion FC. Meeting at 11.30 the families were able to join other specially selected guests at the Hawthorns where they were treated to a gorgeous hot lunch before the main event which was a meet the player's session. The West Brom footballers were once again at their most welcoming and the families involved were able to meet and talk with their idols, autographs were gathered, football shirts signed and long lasting memories were made. After the meet the player's session all our families were invited to take seats in the football ground where they were able to join fans of the club watching as the players worked of their lunch being put through their paces at a special training session. The wonderful Jamie has produced this video blog of his day which includes a wonderful interview with England Goalkeeper Ben Foster, I would urge you all to take a look at the Interview and I hope it gives you as much joy as it bought to this reporter and more importantly Jamie himself

  • Cardiac Staff List
    CHFPlease find below the link to Children's Heart Federation webpage, Cardiac Staff Teams

  • The Rickshaw Run, Tuesday 01 August 2017
    Image: picture_1_thumb.jpgThe Rickshaw Run – Team Livin' on a Paneer The what? The Rickshaw Run is a 3000km adventure riding a 7 horsepower, wholly unsuitable, poorly maintained and all-round awful Auto Rickshaw across India. There is no set route, no backup and no real way of knowing where we are going. Last year Matt, Daisy and Nev rode the length of Vietnam on locally bought, ancient communist motorbikes and this year have decided to make things a whole lot more dangerous and ill-advised. We have decided to go with Max Appeal as our charity of choice along with the organiser's charity - Cool Earth. Max Appeal has offered fantastic support, guidance and friendship to those with 22q as well as their families. The aim is not only to attract donations to this fantastic charity, but also to raise awareness through social media before and during. We are hoping to run a blog during our trip which includes a live tracker so our progress, or lack of, can be monitored and mocked. If you'd like to donate or read more about it our event please see our JustGiving page at:

  • New!!! Student Research Request...
    Please find link below to a small questionnaire My research is on the impact on parents with a child with 22q.11.2 deletion syndrome. I am really interested in this area of the medical field and feel that it has not been spoken about enough! this is why I have chosen this condition as it is very close to my heart and a lot of people have never heard of this condition. In fact nobody in my class or teachers have ever heard of it and that's 100 people that will benefit from my research and hopefully learn and spread awareness. I'm currently studying on an access course; health and health sciences, one of my units is to do an individual project, in which I have chosen to investigate in the awareness of Di George Syndrome (22q.11.2 Deletion).

  • Stand Up for 22q - Hayden's journey
    Image: 19792816_1492716311.0117_thumb.jpegHello all you lovely people. On 15 August 2017 I will be taking on the 60 mile (100km) Great Glen Monster Challenge on a stand up paddle board. The route covers the width of Scotland, and runs from Fort William on the west coast, to Inverness on the east coast. The paddle will take me across the the Caledonian Canal, Loch Lochy, Loch Oich and the mighty Loch Ness. I aim to do this distance in 2 days (it would usually take 3 to 5 days on a canoe) with a paddling time of about 10 hours per day - depending on which way the wind is blowing! Oh, and I'll be doing it on my own. My goal for this challenge is to create awareness for a genetic condition called 22q11 deletion syndrome which my son Hayden was diagnosed with when he was just a few months old. I would also love to be able to raise some money for a number of charities like Max Appeal ‌ that support families living with with 22q11 deletion syndrome. Full details and to donate:

  • Paralympic hopeful speaks out about life-long genetic condition which will not 'get her down
    Alicia Hennessey with her pony Todd at Urchinwood Manor. Picture: Eleanor YoungAlicia Hennessey, aged 17, is one of only 2,187 people in the UK who has been diagnosed with genetic condition, 22q11 syndrome. The condition often goes undiagnosed as it has no set symptoms; it manifests itself differently from one person to the next. However, effects can include fatal heart defects, immune deficiencies and speech and learning difficulties. 22q11 syndrome is caused by a problem with part of a person's DNA, and this small defect is the reason why Alicia has faced so many health problems. Alicia Hennessey with her pony Todd at Urchinwood Manor. Picture: Eleanor Young

  • Have a Brew for 22Q!
    posterWith 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.

  • Swim Serpentine, Saturday 16 September 2017
    Image: logo86166016_thumb.pngWe are delighted to say that following the outstanding success of September's inaugural Swim Serpentine 98.4 of participants rated the event as excellent or good, London Marathon Events has been granted a one year licence by The Royal Parks to stage the event again in 2017 and the date has been confirmed for Saturday 16 September 2017

  • DLA To Have Guidance on Congenital Heart Defects
    Gov.UKA few of us charities have been collaborating to get the effects of heart defects on child recognised with DLA. We're not there yet but this is progress.

  • Infection From Water Cooler Heaters During Surgery
    Mail OnlineSome of you may have seen this article and be very concerned. Please read the attached pdf with guidance from NHS England and if you are still concerned print it and take it to your GP.

  • Kiltwalks in Scotland 2017
    KiltWalkRegister now for 2017 Be a Kiltwalk hero and take Big Steps for a charity or cause that matters to you. With four locations and three walk lengths to choose from, there is a Kiltwalk for everyone. Glasgow Sunday 30th April. Aberdeen Sunday 4th June. Dundee Sunday 20th August. Edinburgh Sunday 17th September.

  • The Color Run - 2017
    Colour RunWhat is The Color Run? The Color Run is the original, largest and most unique 5k colour fun run in the world which celebrates healthiness, happiness, friendship and having the time of your life! London Sunday 11th June. Manchester Saturday 1st July. Brighton Saturday 23rd August.   If you are looking for happy memories, big smiles and the most colourful day you'll ever have – this is the event for you.

  • Great North Run 2017, Sunday 10 September 2017
    Image: run_thumb.pngMax Appeal have secured 35 places for the 2017 Great North Run. Please contact Paul@maxappeal.org.uk to register your interest. Further information to follow.

  • Trek Fest - 2017
    Trek FestTrekFest – the UK's ultimate trekking challenge returns in 2017. Choose Your location. Choose Your distance. Choose Your Charity! It's that simple. Take on the TrekFest challenge, complete 25km or 50km on foot through some of the UK's most renowned and beautiful national parks –  Brecon Beacons, South Wales 3rd - 4th June or Peak District, Derbyshire 2nd - 3rd September.

  • APPG for 22q syndromes AGM - call for MPs support in 2017
    APPG logoHi everyone, Firstly, BIG thank you to everyone who has taken part in our online surveys over the last year or so. It is now coming to fruition! We will shortly have a glossy report for the MPs at our AGM for the APPG for 22q syndromes later this month. It would be really helpful if you could all write to your MP, I've attached a template on the left hand side under files but you can of course write what you want. This is the link to find your MP so you can email them or even phone them up! Our current chair Jack Lopresti MP wants to stand down, and MPs generally are all over the shop with Brexit, party conferences and jockeying for better jobs. So we need a new chair... please do contact your MP! It's really important and your letter WILL make a difference. The APPG is a big coup for everyone affected by 22q11DS. cheers! Julie

  • Birmingham International Marathon, Sunday 15th October 2017
    Image: birmingham-international-marathon60427336_thumb.pngTo be staged for the first time on Sunday 15th October 2017, the Birmingham International Marathon will cement the city's position as the European Capital of Running. Facilities for max Appeal runners, including showers and refreshments, available very close to the start/finish line.

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