• Max Appeal
  • Max Appeal
  • Max Appeal
  • Max Appeal
  • Max Appeal
  • Max Appeal
  • Max Appeal
  • Max Appeal
  • Max Appeal
  • Max Appeal

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

"Thank you yet again to Max Appeal for the handbook, gave it to zak's school and they are DiGeorge experts already."



Adam

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Genetic Disorders UK - Jeans for Genes Day - October 2015

Forthcoming Events

Latest News

  • 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:

  • London Marathon Runners 2017
    London Marathon Runners 2017What an amazing day at the Virgin London Marathon 2017. We had 9 runners running on behalf of Max Appeal and they did us proud with some very impressive times.. 1. Nick Padley 3.22.20 2. Waleed Agabani 3.22.47 3. Neal Mc Cathie 3.25.29 4. Vicky Elston 3.28.48 5. Ross Taylor 3.34.27 6. Paul Warner 4.21.56 7. Russell German 4.37.20 8. James Davis 4.38.22 9. Martin Silvester 4.47.29 They have raised so far £11,000 between them. Max Appeal are very grateful for their support and taking the opportunity to raise awareness for Max Appeal. A fantastic achievement.

  • Sprout - A children's book by Richard Le Tourneau
    Image: sprout_thumb.jpgHi I'm Richard Le Tourneau, I put the post on your facebook group about donating through sales. I'm an author, mainly I write horror but I also have a lot of children's stories I'm working on. I released my first one Sprout last month in paperback (£4.99) and ebook (99p.) I would like to donate to Max Appeal 50% from the sales starting today and ending on May 1st.

  • Youth Activity Weekend, Waddecar Scout Acitivity, Saturday 29 July 2017
    Image: 13903214_10207307182142540_2118532222245421987_n16959788_thumb.jpgMAX APPEAL YOUTH ACTIVITY WEEKEND 29TH – 31ST JULY, 2017 WADDECAR SCOUT ACTIVITY CENTRE, SNAPE RAKE LANE, GOOSNARGH, PRESTON LANCASHIRE PR3 2EU Max Appeal invite you to attend a youth activity weekend for 7 – 25 year olds based in the beautiful Forest of Bowland to help the young people relax and enjoy some time together and it is an opportunity to meet other children and young people affected by 22q. The theme of the weekend is building confidence and self-esteem, working in teams and having fun. We are providing activities for all abilities in a safe environment. Activities include; canoeing, raft building, archery, shooting, explorers walk, visiting local area, team games, crafts, bush craft, climbing, challenge course.

  • Cranham Scout Centre, Youth Activity Weekend, Friday 26 May 2017
    Image: 10256858_10204536607519906_1655414229032509403_n81263368_thumb.jpgMAX APPEAL YOUTH ACTIVITY WEEKEND 26 - 29TH MAY, 2017 CRANHAM SCOUT CENTRE, CRANHAM, GLOUCESTERSHIRE, GL4 8HP Max Appeal invite you to attend a youth activity weekend for 7 – 25 year olds based in the beautiful Cotswold Hills to help the young people relax and enjoy some time together and it is an opportunity to meet other children and young people affected by 22q. The theme of the weekend is building confidence and self-esteem, working in teams and having fun. We are providing activities for all abilities in a safe environment. Activities include; archery, shooting, grass sledging, traverse wall, explorers walk, team games, crafts, bush craft, dam building and challenge course.

  • Meet the Baggies, Wednesday 12 April 2017
    Image: wwba_thumb.pngMeet the Baggies Wednesday 12th April 2017 Entries now CLOSED ! Max Appeal are delighted to announce that we have been invited by our friends at West Bromwich Albion to attend a special meet and greet session to be held at their Hawthorns Football ground. Lunch will be provided by the club and afterwards you will be able to meet the players before you watch them go through their paces at a special training session. If you or your son/daughter are mad about either the Baggies or Football then this is a day not to be missed. Football fans of other clubs may apply but the club would ask that only West Brom Football shirts are worn. If you would be interested in applying for a place please email the name of who you would like to attend and their accompanying carerparent to info@maxappeal.org.uk. Closing date for entries will be Friday 25th March with the 3 lucky winners being contacted by email shortly afterwards. Itinerary 11.30 Guest Arrives 12.30 Lunch is served 13.00 Meet the players 14.30 Training Session Commences Please note there will be others invited groups in attendance on the day

  • 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

  • Echo CHD Heart Event, Tuesday 28 March 2017
    Nevin Lecture Theatre, St Thomas' Hospital near Central Hall

  • Ivy is a candidate for an adversity award
    Image: ivy39611452_thumb.jpgIvy Mitchell has been nominated by the Sleaford Standard for their Overcoming Adversity award. Read the full article about Ivy's challenges;

  • 22nd Wolds Way Run, Sunday 14 May 2017

  • Westminster 10K, Sunday 09 July 2017
    Image: picture198232672_thumb.pngTHE BRITISH 10K Welcome to the ultimate foot tour of London. Run by Trafalgar Square, the Embankment, Big Ben and more on our hop-on-keep-hopping run tour. Flat and iconic, the classic course is ready for your best time and your best selfie.

  • Rare Disease Day 2017, Tuesday 28 February 2017
    Rare Disease 2017Events were organised around the UK, Europe and the world to raise awareness about people living with rare diseases. Max Appeal recently partnered with Mediaplanet UK on the Rare Diseases Campaign in The Guardian newspaper and online. View the link below: Read motivating insight from leaders and learn more from patient stories on rare diseases.

  • Echo Evelina HQ Office
    Echo Evelina are opening their first office on the 27th Feb, opposite the Evelina & St Thomas Hospital, not only will they have an office base but in time they will also be opening a parents resource room that will be free for parents staying at the Evelina London to use offering facilities such as tea/coffee, computers, printers and relaxing furniture- giving space away from the hospital when needed. They will also have a meeting and events space for max 20 people available to rent if you need to hold meetings, training or small focus groups in London. 0207 998 4710 – Main office number 0208 617 3100 – March 13th Direct Line Address: Canterbury House 1 Royal Street London SE1 7LL Closest Station: Waterloo/Westminster Opposite A&E of St Thomas Hospital

  • 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.

  • Max Appeal Scarborough Beach Meet up!, Sunday 13 August 2017
    Image: img_07598324832_thumb.jpgHi Everyone, Martin Kennedy will be hosting the Annual 22q Family meet up on Scarborough Beach again this year on August 13th. This will be the fifth year Max Appeal has run the event and is a lovely, relaxed meet up and everyone is welcome. Make sure you get it in your calendar!

  • Yorkshire Three Peaks Walk 2017, Saturday 22 July 2017
    Image: 118304080_thumb.jpgAre you looking for a challenge in 2017 ? Would you like to help fundraise for Max Appeal ? Would you like to make lifelong friends ? Do you need an incentive to get fit in 2017 ? Do you have a head for heights ?

  • 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

  • Psychiatric Treatments in 22q11DS, Friday 03 February 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.

  • Stevenage Hollywood Bowl, Saturday 25 February 2017
    bowlMax Appeal 22q Family meet up For teens and young adults with 22q & carers/parents 25th February Stevenage Hollywood bowl.

  • Dog Jog, Saturday 15 July 2017
    Image: dog_jog_thumb.pngFun way to raise some money for Max Appeal and have fun with your furry doggy friends.

  • 22q at the Zoo Worldwide awareness day 2017, Sunday 21 May 2017
    Image: 22q-zoo-worldwide-awareness-day-home-300x181_thumb.pngMark your Calendars for the Seventh Annual 22q at the Zoo for Sunday 21st May 2017. Further details to follow.

  • Invitation to one Max Appeal family for an exclusive Landmark Trust property weekend break.
    Image: stockwell_farm_thumb.pngApplications are open to Max Appeal families for an exclusive Landmark Trust property weekend break. Date: 17 -20 March, 2017, Staying At: Stockwell Farm, Old Radnor, Powys. Closing date for applications: 31.01.17

  • 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 Midlands Fun Run 2017, Sunday 04 June 2017
    Great Midlands Fun Run

  • Milton Keynes Festival of Running, Sunday 05 March 2017
    mkThe Milton Keynes Half Marathon and Festival of Running takes place on Sunday 5th March 2017 starting at our wonderful Xscape city-centre venue and we hope you will come and join us!

  • 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.

  • Parallel London, Sunday 3rd September 2017
    Image: p_l_2017_thumb.pngjoin us for parallel london 2017! Parallel London is the world's first fully inclusive mass participation event. Parallel London is designed for all ages and abilities; we are a national celebration of inclusion.

  • 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.

  • Vitality North London Half Marathon, Sunday 12 March 2017
    Image: logo2768768_thumb.pngThe third Vitality North London Half Marathon is back for 2017! On Sunday 12th March 2017, thousands of runners will take on the challenge of this popular closed-road race and cross THE GREATEST FINISH LINE IN THE WORLD, inside Wembley Stadium connected by EE.

  • 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

  • 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.

  • Great Donington Run, Sunday 25th June 2017
    Image: picture156048064_thumb.pngWith a selection of distances available throughout the day including a 10 mile, 10k, 5k and Family Mile event, runners of all ages and abilities can come along to take on a challenge while enjoying a summer festival atmosphere.

  • Great Manchester Run 2017, Sunday 28 May 2017
    great manchester

  • 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.

  • Edinburgh Marathon Fest, Saturday 27th May 2017
    Edinburg Marathon Festival 2017Amazing event with something for every runner of ever age! Marathon, half marathon, marathon relay, 10k and 5k for the grown ups. Junior runs are 5k, 2k and 1.5k, with a 1k for kids as well. There's also loads of activities and entertainment for the runners 'support team'.

  • London to Paris Bike Ride, Tuesday 06 June 2017
    Image: london-to-paris-2013-gallery-1_thumb.jpgThe organisers say: This iconic cycle ride connects two of the world's most vibrant capital cities and is an ideal fundraising event for your more adventurous supporters. Making their way through beautiful English villages and into the stunning countryside of rural France, your supporters will pass historical landmarks and famous battlefields until they reach Paris – which is undoubtedly one of the most magical places in the world. This fantastic challenge is perfect for groups and solo cyclists and your supporters will have the support of our highly experience crew... London to Paris Bike Ride 2017 Dates:

  • Blooming Marvellous
    Image: flowercollection_thumb.jpgOrder your very own special collection of chrysanthemums prepared by John Bawden, Head Gardener at Coombe Lodge, Blagdon and Chelsea Flower Show winner. John has prepared these plants especially for Max Appeal. All proceeds are being donated to Max Appeal. Order via the Max Appeal Shop.

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