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

Dear Dr Kumararatne, I am currently caring for a baby girl with a recent diagnosis of 22q11 deletion. I have used the article ‘towards a safety net for management of 22q11.2 deletion syndrome: guidelines for our times’, published in the Eur J Pediatr to guide my management so far. I’d like to thank and congratulate you and your co-authors on the review article. It is an excellent piece of work and has proved invaluable to me in dealing effectively with this patient. Many thanks David Booth Dr David Booth Consultant Neonatologist | Neonatal Intensive Care Unit Clinical Director | Paediatrics Honorary Senior Lecturer | Norwich Medical School

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Forthcoming Events

Latest News

  • Virtual 22q PJ Crew PJ Party, Friday 22 November 2019
    pj partyPut on your PJ's, host a party, have a movie night or just stay at home. Take pictures of you, your friends and your family in your PJ's and post your photo's to our socials with the hashtags #22qPJcrew #22qawareness

  • 22q Families Theatre Event - Chickenshed, Friday 03 January 2020
    snow whiteMax Appeal invite members and immediate family to a Chickenshed production of Snowwhite, matinee showing 3pm on the 3rd January 2020. Southgate, London. N14 4PE Tickets are limited to 30 so please book quickly as I think they will sell out.

  • 22Q11 Awareness Month of November, Friday 01 November 2019
    Image: 22q_awareness_in_powerpoint_thumb.pngNovember is the special month to raise awareness of 22Q11 DS.

  • 22q11 Speech & Language latest practices
    New research paper on 22q11 Speech & Language latest practices.

  • Sky Dive for Max Appeal
    Skydive BuzzBook a Skydive for Max Appeal. 8th March 2020

  • Ben Smith 300K Paddle Board
    Image: good_picture_thumb.jpgA massive thank you to Ben Smith and family Four-year hold Jacob inspires his family to complete 300K paddleboard challenge which raised over for £3K Max Appeal

  • Cranham Camping May 2019
    cuppa teaOn Friday 3rd May Max Appeal families came together once again for our much loved youth weekend in Cranham, Gloucester. Returning families once again came together like long lost friends and welcomed into the group our first timers, following our usual pattern the Friday was about setting up camp and getting to explore our surroundings before a much needed group meal in the indoor centre. Following on from this our very own resident DJ Ryan entertained the troops with a disco whilst the parents grabbed a chance to talk and share experiences. For those who have never experienced camp we once again had access to indoor sleeping bunks along with our own camping field so that we are able to cater for all requirements.

  • Coledale Horseshoe Max Appeal Ramblers
    ColeshoeThe second of our rambles was in July where we met once again to tackle the 12 peaks of the Coledale Horseshoe in Cumbria, following our usual format of meeting in the bar the night before to discuss plans we set off on a warm morning looking forward to the stroll ahead, little did we know what lay ahead as our guide Martin had downplayed the effort needed to complete the walk. Once again the views were stunning and the weather stayed good for us but boy was this a tough walk. Working together we climbed each peak as a team, it's difficult to explain the bonds that are made as everyone is supported to help overcome their fears.

  • Ben Nevis Max Appeal Ramblers
    Image: ben-nevis-small-photo-ben_n-676x239_thumb.jpgThe Max Appeal ramblers continue to go from strength to strength as we welcomed new members to our social ramblings in 2019. This year we set ourselves two challenges, the first of which began in June with a climb up Ben Nevis in Scotland, after arriving early on the Friday evening and enjoying some of the local hospitality we set of to bed early knowing that in the morning we would be challenging ourselves to walk to the highest point in the UK. Please note we class 00.30 as early during our rambling weekends.

  • Max Appeal Conference and AGM Birmingham 31st August, 2019
    Conference 2019Thank-you for all the positive comments we received about our recent conference. It takes a great deal of planning and time to organise these very valuable days. We would also like to thank all our speakers who gave up their time to attend and share their expertise. The staff at the Education Centre at Birmingham Children's Hospital for the use of the facilities and to the National Lottery for support with the funding of the event. It was great to see members fully participating in the day and hopefully better informed by the time they headed home. If there are subjects you would like to see covered at future events then please let us know by emailing us at info@maxappeal.org.uk

  • NHS appointments no shows!
    NHS no showAlex Mathews-King, health correspondent for the Independent reported last year that missed out patient appointments were costing the NHS more than £1bn each year. ' Patients missing appointments cost the health service almost £1bn last year, NHS England's chief nurse has said.

  • 22 for 22q, Friday 01 November 2019
    MedalThe month of November is important on the 22q11 calendar as it's awareness month so here at Max Appeal we are inviting members, families and friends to take part in our virtual race, not only will you be helping to create awareness but also working towards your very own reward medal.

  • Lapwings Max Appeal Scottish Members Camp Weekend
    Group lapwingsWritten by Louise, mom and Trustee Wow. Where do I start! I don't think there's enough words to describe how amazing the first Max Appeal Scottish Camp was. From the minute we arrived until the minute we left there was just smiles and fun in abundance. I'm not gonna lie, myself and Sarah were super anxious about the whole thing. But it all just melted away as soon as we arrived.

  • Max Appeal Birmingham Conference, Saturday 31 August 2019
    We are organising a parent conference at Birmingham Children's Hospital Education Centre on Saturday 31st August, 2019.

  • Stay Calm Project
    Stay calm projectThe Stay Calm project is being led by Justin Chung, under the supervision of Dr Kate Woodcock, at the School of Psychology, University of Birmingham. We are looking for parents or caregivers of individuals between the age of 6 years old to 25 years old, who have emotional outbursts at least once a month. The study aims to use your responses to ensure that the questionnaire is accurately measuring emotional outburst characteristics. This will be a valuable tool in future to help us and others to better understand emotional outbursts and how to treat them. If you are interested in taking part, please access the questionnaire with the link below:

  • David Duguid - Congratulations to David... But Bad News for Max Appeal
    David DuguidClaire Hennessey, David Duguid MP and Julie Wootton meet up at the House of Commons during an Arrhythmia Alliance reception on 5th June 2019. Big congratulations to David for securing his post as a PPS (Personal private Secretary) but the bad news for Max Appeal is that the lovely and motivated chairman of the 22q11 Syndrome APPG will surely have to stand down.

  • Heart Surgery PSP Workshop - Expression of Interest
    Heart Research 19The Heart Surgery Priority Setting Partnership wants to find the Top 10 priorities for heart surgery research, working with heart surgery patients, their carers and families and the health professionals who treat them. Together, we want to discuss and decide the top ten priorities at a workshop, to be held in Leicester on the 11th July.

  • 22q11 Northern Ireland Conference, Friday 17 May 2019
    22q northern ireland logo22q11 Northern Ireland would like to invite you to our first 22q Conference on Friday 17th May at the Belfast City Hospital 9am - 5pm. Breakfast, lunch and breaks will be provided.

  • Chromosomal disorder screening plans move forward
    David DuguidA north-east MP is delighted screening for a chromosomal disorder could be introduced after a review by a national body.

  • 3rd European 22q11-deletion Syndrome Conference, Saturday 16 November 2019
    22q soc catalunIt is an honor for the Catalan Association of the 22q11.2 Deletion Syndrome to host the third European Congress on the 22q11.2 Deletion Syndrome. On November 16-17 2019, we will welcome to Barcelona well-known doctors and researchers on the syndrome who will be sharing their knowledge and expertise during two days with families and professionals from all over Europe.

  • David Duguid MP aks about new-born screening at PMQs
    APPG logoDavid Duguid MP, chairman of the the all-party parliamentary group (APPG) for 22q11 syndromes, called for the condition to be added to the newborn blood spot test. The Prime Minister, Teresa May, replied that she would request a minister from the Department of Health and Social Care to respond. Max Appeal would like to thank, Mr. Duguid, the APPG, and Mrs. May, for helping to add this important condition to the newborn screen test in the UK.

  • Rachel Colley - My Education Journey
    Rachel ColleyMy Educational Journey I've definitely gone the long way round when it's come to my education. I wasn't the brightest at high school and had to have a lot of support to get me through it. When I was in A Level I had no intention of furthering my education. I thought that I would just go and get a job and that would be it. I got C's in my GCSE's and I got low grades for my A Level's. The support I received was that of a mentor and an assistant to help me with organising my deadlines and notes in class. I wasn't a quick writer so found it a difficult task to keep up with making notes. They also gave me extra time for my exams. For the full story - please click the document attached...

  • SIMPLYHEALTH GREAT BIRMINGHAM RUN 13.1 mile, Sunday 13 October 2019
    Birmingham half marathon 2019Take your place as the city comes together for this half marathon challenge. Experience the support of the community all the way along the 13.1 mile course through the heart of Birmingham.

  • Request for lay representatives to help review NHS services - CHD
    NHSDid you know that, as a patient with congenital heart disease (CHD) or carer for adults/children with this condition, you can join a team who work to help maintain and improve care in our hospitals?

  • Petitions - Blood Test for 22q
    petitionsPetition Add the blood test for 22q to the Guthrie test 'heel prick' newborn screening. Please click the link below and sign the petition.

  • Max Appeal Webinar - Apprenticeships
    Max computerMax Appeal ran it's first webinar in December. We thought we would try out this method to communicate with our members and use a subject, 'Apprenticeships' which would be of interest. Here are the links to the outputs in case you were not able to join the webinar. (SJ Jan 19)

  • Great North Run 2019 8th September
    Mark Trip TrainWe are delighted to announce that the spirit of the Max Appeal Express will be living on in 2019 when a team of train drivers take on the Great North Run carrying a replica of our much-loved train, the team consisting of our very own trustee Mark Tripp and his train driving Colleagues John Doyle, Barry West, Connor Gosling and Luke Venneear have already began training for what should be challenging but fun run in September 2019.

  • Amazon Smile
    AmazonHow does AmazonSmile work? When first visiting smile.amazon.co.uk, customers are prompted to select a charitable organisation. Amazon will give 0.5% of the net purchase price (excluding VAT and other shipping fees) of eligible AmazonSmile purchases to the charitable organisations selected by our customers

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