• 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. This board (Max Appeal - The Official Group on Facebook) is my lifeline" x Justine

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Genetic Disorders UK - Jeans for Genes Day - October 2015

Forthcoming Events

Latest News

  • Max Appeal Ezine July 2018
    header logoMax Appeal Ezine July 2018

  • Baby's heart condition detected through new born screening
    heart detectedA local family have praised Daisy Hill Hospital's paediatric team's innovative screening programme following the detection of a major heart condition in their new born baby girl.

  • Landmark moment for Stourbridge family's screening plea
    Image: raising_private_members_bill_247850544_thumb.jpgA STOURBRIDGE family's near 20-year quest to raise awareness of a little-known genetic disorder has enjoyed a huge breakthrough in Parliament. Wollaston couple Paul and Julie Wootton lost their son Max, aged just four months, to the rare Di George Syndrome condition in 1999. They set up the Max Appeal charity in his memory and have been campaigning for a screening programme to catch the condition – also known as 22q11.2DS – in the days after birth.

  • Ten Minute Motion Bill in Westminster for 22q11 Syndrome, on Tuesday 5th June, 2018.
    Image: raising_private_members_bill_247850544_thumb.jpgWe were all thrilled at Max Appeal when we heard David Duguid MP, Chair of the 22q11 All Party Parliamentary Group (APPG) had secured time in the parliamentary timetable to raise a Private Members Bill on 22q11 Syndrome. The aim is to include 22q11 in the genetic conditions tested for in the 'new born infant screening blood spot test' for all babies at five days old. He also the Department of Health to conduct a review and publish a strategy for 22q11. If you have not yet seen his speech, you can view it here Share the link with as many family and friends as possible to help raise awareness of 22q11.

  • 22q At the Zoo 2018
    GroupDear Max Appeal members, we had a lovely day at Whipsnade Zoo this year, raising awareness of 22q with our joint enthusiasm, with some of us wearing the new Max Appeal t-shirts, some people in previous years t-shirts, some people in their own wonderful creations and some people just along for the fun, as one big 22q family where we are all welcomed. There was a lovely mixture of old friends and new, both adults, young people and children seemed to enjoy the occasion. We loved the bird display. Other Max Appeal families visited other zoo's such as Marwell, Five Sisters, Chester and lots of local zoos too. Thanks Max Appeal for the continued support and opportunities to meet our ever extending family.

  • Max Appeal Annual General Meeting held at Cranham Camp 28th May 2018
    Due to the numbers attending camp we were able to form a quorate, all motions were passed with Julie and Paul Wootton being re-elected as Chair and treasurer respectively along with Rachel Boyle who retains the her role as secretary. Congratulations to all three. Two new trustees were also elected and Max Appeal warmly welcomes both Tracey Hennighan and Maria Rogdaki onto the board of trustees, Maria brings professional expertise from the world of mental health and Tracey brings with her expertise as a child care practitioner and also a parent of a teenage 22qer. Members were also updated with regards to imminent happenings regarding the 22Q11 APPG group along with discussions regarding Max Appeal's finances and plans for the year. Many thanks to all members who participated in the AGM, these meetings are an important opportunity for the board to listen to our members priorities. Mark Tripp Trustee

  • Cranham 2018
    Isobel and Trustee Mark Tripp raise the Max Appeal flag at the start of Cranham 2018Once again Max Appeal Families from across the country met at the Cranham Scout Centre for the start of our annual Youth Camp. With a mixture of indoor bunks and campsite we were once again able to cater for all and for those who needed something a little bit more extreme such as my fellow trustee Martin Kennedy there is always a handy Premier Inn situated 5 minutes away. "Isobel and Trustee Mark Tripp raise the Max Appeal flag at the start of Cranham 2018"

  • Shepreth Wildlife Park 22q Family Meetup, Sunday 05 August 2018
    sheprethMax Appeal families are cordially invited to join us on Sunday 5th August at Shepreth Wildlife Park in Cambridge to enjoy a family day out and to celebrate, bid a fond farewell to the Max Appeal Express.

  • The Max Appeal Express
    trainIt is with great sadness that we inform members that our beloved train 'The Max Appeal Express' was withdrawn from service in February of this year. Unfortunately we were not informed before her removal from service so we didn't have an opportunity to say good bye to our special train which had become such a massive awareness raiser for both Max Appeal and 22q11 and was a huge hit across the globe with all our sister 22q11 organisations. Whilst we are deeply disappointed that the train will no longer be seen in public the board of trustees will be forever grateful for the opportunity given to us to promote our charity and raise public awareness of 22q11. We once again thank everyone involved who helped with bringing the Max Appeal Express into existence. Max Appeal families are cordially invited to join us on Sunday 5th August at Shepreth Wildlife Park in Cambridge to enjoy a family day out and to celebrate, bid a fond farewell to the Max Appeal Express. On behalf of the Board of Trustees

  • Shuttleworth 22q Family Meet up, Sunday 26 August 2018
    Shutteworth18Mark and Kelly Tripp would like to invite you all to a day at Shuttleworth Air Museum on Sunday 26th August, it is situated approximately 2 mins from the Biggleswade junction of the A1m in Bedfordshire.

  • Raising Private Members Bill, House of Commons, Tuesday 05 June 2018
    HofC logoMax Appeal supports David Duguid MP (and Chair of the 22q11 All Party Parliamentary Group (APPG)) Ten Minute Rule Bill where he called for the Secretary of State for Health and Social Care to conduct a review into 22q11 Deletion Syndrome (also known as Di George Syndrome) and for the NHS to publish a strategy once that work is complete.

  • Health care provision for adults with 22q11 DS Survey
    SurveyWe would like to hear from people with 22q11 Syndrome and their current experience of accessing health care in adult services.

  • 22q Family And Friends Meet Up Cannon Hall, Thursday 16 August 2018
    Cannon hill farm16 August at 10:30–15:30 Cannon Hall Farm Bark House Lane, Cawthorne, S75 4AT Barnsley

  • Neurodevelopmental Outcome in 22q11.2 Deletion Syndrome and Management
    Recently published paper. (Mar 18)

  • Cardiovascular Care Partnership Annual Conference, Wednesday 06 June 2018
    CCPManchester Central Convention Complex

  • Max Appeal AGM on 26th May 2018 at Cranham Scout Camp
    News bearAGMs are a requirement of the charity commission but we thought you'd enjoy it more if it was in a convivial atmosphere... like the camp weekend! Please see the attached for more information about the charity, the AGM and how to exercise your voting right (if you're a member). If you want to comment or have any further information get in touch via the usual routes.

  • Bournemouth Marathon Festival, Saturday 06 October 2018
    Bournemouth marathonExperience 'running as it should be' at the Bournemouth Marathon Festival – enjoy coastal views, run the piers and set a new PB at your favourite distance.

  • London Marathon 2018 Runners
    London Marathon 2018Please support our 2018 Virgin Money London Marathon runners. Share their pages and help boost their fundraising.. all monies going to Max Appeal. Jack Padley; 

  • Day on the Beach. Annual Max Appeal meet up, Sunday 15 July 2018
    Scarborough_BeachThe plans are to meet up on Scarborough Beach on the North Bay for our fifth annual meet up on Scarborough beach. It's the usual place infront of the Sands Apartments just at the end of Royal Albert Drive. I shall be getting there around 9.30am and shall put the windbreaks up with the Max Appeal flag on so will be easily visible from the front. It's open to all so if you're tempted and have the time please come along and share your story with us all.

  • Max Appeal Rocks!
    rockWelcome to Max Appeal Rocks! This page has been inspired by similar ventures, and creative friends. It's aim is fun and to raise awareness of Max Appeal, a small charity with an ethos 'to improve lives of 22q11 families.

  • Jack Padley is running the London Marathon for Max Appeal
    Jack PadleyPlease sponsor Jack who is running the London Marathon. Jack is a family friend of Ivy Mitchell and her family. Newspaper article attached. Link to donate at virginmoney below:

  • Rare Disease Day 2018: Joint North South Conference, Riddel Hall, 5 March
    RDDJulie attended the joint Irish rare disease event at Riddel Hall in Belfast on 5th March and was really pleased to see the great joint presentation from Gillian Cassidy of 22q11NI and Anne Lawlor of 22q Ireland which really brought 22q11DS to the front of the queue (no pun intended) at the meeting. Max Appeal got lots of mentions as the go to place. The dynamic and motivated Dr Tabib Dabir gave the run down on his innovative transition clinic that has been running in Belfast for two years now, ably supported by Gillian. This is certainly a model that could be replicated.

  • Association of Paediatric Cardiologists Working Group
    Julie attended this event in order to promote the consensus document and maintain relationships with other European links but there were also delegates from Canada and Australia. The theme of the event was based on psychological effects of having congenital heart disease and the effects of heart surgery, over a person's life. Julie was very pleased to catch up with many people from the UK, Netherlands, Finland, Italy and Germany. It was good to see our very own Claire Illingworth from Cambridge who has made valuable contributions to the Consensus Document, and Kerry Gaskin who is keen to ensure that the Congenital Cardiac nurses Association is always kept informed about 22q11DS.

  • Craig's Cycle Challenge Crewe to Weston Super Mare.
    CraigCraig is cycling from Crewe to Weston Super Mare to raise awareness and funds for 22q11 and Max Appeal. Follow his progress; https://www.justgiving.com/fundraising/craig-powell6 https://twitter.com/HuxleyMichelle

  • CHD Patient Survey
    CHD survey adultA new patient experience survey specifically for congenital heart services has been launched across England. This survey is hosted online and designed to enable all patients - both adults and children - and their parents/carers to report on their experiences of care at specialist surgical (Level 1) centre. There are separate surveys for outpatients and inpatients as well as surveys specifically aimed at parents/carers, children and adults/teenagers. The surveys have been developed through a number of interviews with patients and parents carers and is therefore designed to reflect the aspects of their care which were important to them. These survey enable patients' experience of care to be reported in a consistent way across all centres in england. The survey is being hosted by an independent organisation (MSB Consultancy) who will produce quarterly reports as well as a more detailed annual report for each centre. These reports will provide a valuable tool in enabling centres to better understand and respond to patients' and parent/carers' experience of care. We would encourage all patients and/or parents/carers to complete a survey following any outpatient appointments or inpatient admissions by going to: If you have any further questions about the survey please feel free to contact MSB Consultancy directly at info@msbconsultancy.com.'

  • The Colour Run London, Sunday 08 July 2018
    Colour RunIs it a bird? Is it a plane? No, it's The Color Run Hero Tour 2018! The Color Run is back and it is soaring to London Wembley Park on 8th July 2018!

  • Improving Lives - The future of work health and disability
    Dept WorkThe Department of Work and Pensions and the Department of Health have issued a White Paper on how they will make disabled people's lives better in the future. Easy to read versions available here;

  • Feeding Children With Heart Conditions
    CHF jan18The aim of this information sheet is to explain why many children with heart conditions have eating problems and what you as a parent can do to help overcome them. Click to download factsheet

  • Scottish Disability Golf & Curling
    ScotlandTwo sports founded in Scotland, are now on offer to disabled people for the first time!!! The SDGP and the DCS have now merged to form Scottish Disability Golf & Curling Sticks & Stones

  • Birmingham International Marathon, Sunday 14 October 2018
    Birm int marathon 18General entries for the 2018 Birmingham International Marathon are now open!

  • Max Appeal Ramblers 2018 - Snowdon, Saturday 21 July 2018
    stockAre you looking for a new challenge in 2018? Would you like to meet and spend time with other Max Appeal parents? Have you ever wanted to climb a mountain? Have you ever wanted to take on a challenge that didn't involve running? Can you work in a team? Would you like to fund raise for Max Appeal?

  • Great North Run 2018, Sunday 09 September 2018
    Image: photo_group__thumb.jpgMax Appeal are pleased to report that we have been successful in securing a Bronze + Charity package for the 2018 event to be held on Sunday 9th September.

  • 11th Biennial International 22q11.2 Conference, Wednesday 11 July 2018
    22qsoc11th Biennial International 22q11.2 Conference

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