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

“Thank you so much for sending us your materials from Max Appeal! You are doing a terrific job and I'm sure the families are gaining a tremendous amount of insight into the deletion, as well as, emotional support from your publications. I also applaud your interests in educating professionals about the deletion. This is really a "grassroots" effort which I'm sure will pay off in the long run. Could you please tell us how we can remain on your mailing list and also let us know if there is anything we can do to help you. We would be delighted to help in any way we can!” Donna M. McDonald-McGinn, M.S., C.G.C., The Children's Hospital of Philadelphia

Forthcoming Events

Latest News

• Update of 22q11 research studies from Cardiff University
  At today's AGM Dr Sam Chawner presented information from Cardiff University's research.

• Special Drop in Session - Mental Health and 22Q11 Slides
  Please find attached the slides from the Zoom meeting Mental Health Presentation by Dr Maria Ragdaki.

• The Hoad and the Roundhouse to turn red in support for Ulverston boy with Digeorge Syndrome
  TWO of south Cumbria's iconic buildings will be lighting up red to show their support for a youngster whose parent's were told he was 'not compatible with life'. Ulverston's Hoad and The Roundhouse Cafe and Hub in Barrow will shine red on Sunday for Ulverston youngster Maxen Shaw.

• 2020 Annual General Meeting, Sunday 29 November 2020
  To all our members,

• Xmas Party Heroes
  Join many other businesses in making a BIG difference to a LOT of people's lives this Xmas. Donate the unused cost of your Xmas party to a charity of your choice. You and all your staff can become instant #XmasPartyHeroes

• Vicky Ford MP Parliamentary Under Secretary of State for Children and Families 9 November 2020
  To all children and young people with special educational needs and disabilities (SEND), their parents/carers and families, and others who support them

• Have a Brew for 22q
  22q Awareness Month of November 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.

• 22Q11 Awareness Weekend 21st/22nd November, Saturday 21 November 2020
  To celebrate awareness month Max Appeal are pleased to announce the following family events to help bring us all together in these uncertain times.

• Special Drop in Session - Mental Health and 22Q11, Tuesday 03 November 2020
  When: Tuesday 03rd November 2020 19:30 until 21:30

• CoIN Study Kings College London
  The CoIN Study will track changes in wellbeing during and after the pandemic in order to understand the specific challenges facing families of children with rare disorders and how these relate to mental health and wellbeing. Your responses will be rapidly fed back to charities and support organisations, and used to identify and provide better ways of supporting you both now and in the future.

• SWSW CHD Network Annual Report 2019 20
  We are delighted to share with you the South Wales and South West Congenital Heart Disease Network Annual Report for 2019-2020.

• Back to School, Thursday 20 August 2020
  Online event for parents of children with serious health needs organise by Wellchild, in partnership with North and South Thames Paediatric Networks.

• Join My Prudential Ride London to help save the UK's charities
  We're inviting you, your family and friends, to get on your bike – or scooter, skateboard, trike, tandem, penny farthing, unicycle – to fundraise for Max Appeal as part of a campaign to help save the UK's charities.

• IPSEA training via Zoom for parent carers
  These online Zoom sessions could be useful to members who are either looking to obtain a EHCP or who have an existing plan. They are able to ask questions of an expert during the day. For parents and carers IPSEA are running two EHCP Masterclasses in July. One for those looking to obtain a plan and the other for those with an existing plan. If you want to understand your rights and the law around education, health and care plans then these masterclasses are for you.

• BCCA updated practical guidance for patients, parents, charities and support groups 11July
  Introduction The COVID-19 pandemic has been challenging both for those who provide healthcare services and for patients and their families. Clinical staff are grateful for the patience and support demonstrated by patients and families as they continue to work to provide good clinical care in very difficult circumstances. While we have given the best advice we are able at this time, our understanding is rapidly developing and the course of the pandemic progressing. This means that the best advice will continue to change. There are likely to be regional differences in the course of the pandemic, and speed at which services are able to return towards normal. Please see attached link for full document

• Weekly Schedule week commencing Monday 1st June, Monday 01 June 2020
  Weekly Schedule week commencing Monday 1st June Max Appeal is delighted to bring to its members the following online activities

• Weekly Activities week commencing Monday 25th May, Tuesday Tuesday, May 26, 2020
  Max Appeal is delighted to bring to its members the following online activities

• 22q and ZooM Worldwide Awareness Day, Sunday 17 May 2020
  Join Us Live for 22q and ZooM!

• Win £1,000 for your charity
  Can I please ask members to complete this very simple form, nominating Max Appeal, with a chance to be one of 500 charities to win £1,000.00. Our Charity number is 1088432 Nominations are open now until Sunday 24th May and each person can only vote once.

• Face Coverings
  The English government is advising that members of the public should consider wearing a face covering to help prevent the spread of Covid-19. What the government say – 'They may be beneficial in places where it is hard to follow maintain social distancing measures. This applies when using public transport, such as trains, buses and metro systems, or when visiting shops. They do not need to be worn outdoors, while exercising, in schools, in workplaces such as offices and retail, by those who may find them difficult to wear, such as children under two or primary aged children who cannot use them without assistance, or those who may have problems breathing while wearing a face covering' Please follow link for full details

• Updates to Government Advice
  Updates to Government Advice The following are links to the current government advice as of the 13th May 2020 and apply to England only Link:

• Bedtime Stories by Gemma Keir
  Max Appeal member and author Gemma Keir has kindly agreed to present a series of bedtime stories for our families to enjoy. Please tune into our members Facebook group every Monday night from 18:30 as Gemma reads stories from her amazing 'The abilities in me' series of books https://www.theabilitiesinme.com/

• Max Appeal Hospital Passport
  As part of their response to Covid-19 the Government give the following advice 'We advise all carers to create an emergency plan with the person they care for, to use in circumstances where help from other people to deliver care may be needed. Depending on the circumstances, this could be help from family or friends, or a care provider. In order to create an emergency plan that fits the needs of the person you care for, you will need to set out: the name and address and any other contact details of the person you look after who you and the person you look after would like to be contacted in an emergency details of any medication the person you look after is taking details of any ongoing treatment they need details of any medical appointments they need to keep' For families who wish to adhere to the guidance can download and print our newly launched Hospital Passport, this passport will help inform medical personal about sources of information regarding your loved one.

• Max Appeal Family Bake Off - Every Thursday at 2.30pm
  Easy to follow baking lessons bought to you live on behalf of Max Appeal. Each week Amanda will present an easy to follow live lesson so dust off the aprons, dig out the scales and get ready to make these delicious homemade recipes. This will be a live performance on our closed members only Facebook Group This will run every Thursday 23rd April 30th April 7th May 14th May Recipe details attached.

• 2.6 Challenge
  Many fundraising events have been postponed across the country. Last year between April and September your fabulous support helped generate £65,000 of income for Max Appeal Launching on the 26th April, the '2.6 Challenge' https://www.twopointsixchallenge.co.uk/ aims to promote fundraising for all UK charities including Max Appeal, we need your support now more than ever.

• Max Appeal Virtual Pub, Saturday 25 April 2020
  Max Appeal Virtual Pub Saturday 25th April 20:00

• Max Appeal Family Quiz Night, Sunday 26 April 2020
  Max Appeal Family Quiz Night Sunday 26th April at 19:00

• Have a Brew for 22q - Virtual meetup, Wednesday 22 April 2020
  Have a Brew for 22Q Max Appeal trustee Tracey Hennighan is delighted to be hosting a series of weekly virtual mums' meetings every Wednesday from 14:00.

• Max Appeal Family Bake Off, Thursday 23 April 2020
  Max Appeal Family Bake Off Thursday 23rd April 14.30

• Max Appeal Virtual Drop In Session, Tuesday 21 April 2020
  Max Appeal Virtual Drop In session When – Tuesday 21st April at 19:30 Where – Your Home

• Max Appeal Virtual Drop in Session, Tuesday 14 April 2020
  Max Appeal Virtual Drop in Session

• KEEP CHECKING ON OUR COVID-19 TAB ABOVE FOR INFO AND UPDATES.
  April 2020

• Virtual Days Out
  Like so many we are all missing our days out with the family, until its safe for us to venture back outside for anything other than exercise, shopping, medical support or essential work we have the found the following virtual days out. So whether you want to plan ahead for safer times and plan your holidays or take the kids to the Zoo you will find our favourite links here (photo - throwback to Lapwings 2019)

• Health & Wellbeing
  Some useful information to help support your health and well being.

• Social Story about Coronavirus
  Fabulous social story to help understand what is happening during the Coronavirus crisis.

• Home Activities
  Hope you find this list of resources for home activities useful during this current crisis.

• Chat Magazine raising awareness of 22q11 syndrome
  Mother's Day article in Chat Magazine by journalist Emma Rossiter raises awareness of 22q11 syndrome. Channon shares her story and journey about her son Blake.

• Max Appeal Youth Camps 2020
  We were planning to hold an annual youth camp at Cranham Scout Centre in May. Due to the situation with how the Coronavirus is escalating in the Uk we have decided to cancel camp for this year. We were also expecting to hold a similar residential camp in Scotland in July 2020, but again due to the Coronavirus outbreaks we have decided not to proceed. We hope to resume camps for 2021. Thank-you for your understanding.

• Coronavirus Advice Updates
  We hope the following attachment is helpful.

• Velo Birmingham & Midlands, Sunday 21 June 2020
  Join up now under general entries to take part in the 3rd Velo Birmingham & Midlands and help raise funds for Max Appeal. https://www.velobirmingham.com/enter-now/

• Johnny had an Amazing Day At Manchester Football Club
  Johnny was diagnosed with 22q at 2 years old. He turned 8 in December and is mainly affected by speech and language issues, and can be anxious with unfamiliar situations and people. He loves playing football and watching Man City, and his favourite player is Kevin De Bruyne. We live near Glasgow and planned a trip down to watch them play in their FA Cup match v Fulham on Sunday. I emailed the club Supporter Liaison Officer to ask what time the team bus would arrive so that Johnny could see Kevin arrive, explaining briefly his condition and that he gets anxious. We were absolutely blown away by their response, promising to make Johnny's day special. He was given access to the 'blue carpet' where he could high-five the players as they arrived off the bus, then taken on to the pitch before the game to have his picture taken with the team. At first when I spoke with him, Johnny was unsure about being on the pitch with 40,000 people watching on, but was so excited at the experience he was an absolute star and went on with the other boys and girls in the group, leaving me at the side of the pitch. The club were extremely accommodating, letting Johnny decide what he was comfortable with and giving me the opportunity to be with him whenever he needed support. I think he gained a lot of confidence and self-belief on the day and surprised his family, and maybe himself, at how brave he was! I know this was a big deal for him. Johnny is second from the right in the second row, wearing the yellow kit.

• Great North Run 2020, Sunday 13 September 2020
  Max Appeal are pleased to report we have been successful in securing 35 spaces for the Great North Run. We have also secured a marque at the finish line.

• David Duguid MP 16 January 2020
  Delighted to have been re-elected as Chair of the All Party Parliamentary Group (APPG) for 22q11 Syndrome. Thanks to Max Appeal 22q, DiGeorge, vcfs for providing secretariat support to the APPG and for all of their valuable support to children and families affected by the second most common chromosomal disorder after Down's Syndrome. Thanks also to Parliamentarians; Lord Farmer, Jack Lopresti MP, Robert Goodwill MP, Dr Lisa Cameron MP, Alex Sobel MP and Suzanne Webb MP for agreeing to join the group.

• Understanding the diagnostic odyssey experienced by families impacted by 22q11.2 deletion syndrome
  Understanding the diagnostic odyssey experienced by families impacted by 22q11.2 deletion syndrome Would you like to get involved in a research study? Are you a parent or carer of a person with 22q11.2 deletion syndrome? If so, you are being invited to take part in a research study, looking at your experience of obtaining a diagnosis of 22q11.2 deletion syndrome in the UK for your child.

• 22q At the Zoo 2020, Sunday 17 May 2020
  This years 22q at the zoo is on Sunday 17th May 2020. The following zoo's will be hosted and tickets subsidised by Max Appeal: Battersea Park Zoo Chester Zoo Five Sisters Flamingo Land Bristol Zoo Please click on "More information button"

• APPG Message from David Duguid MP January 2020
  Good afternoon everyone. I hope everyone had a great festive period and I would like to wish you all the very best for 2020. As many of you will know, in the previous Parliamentary session, I was Chair of the House of Commons All Party Parliamentary Group for 22q/DiGeorge Syndrome. As we begin a new session, all APPGs have to be re-established. I very much hope to be re-elected as Chair but for the group to become established formally, we need representation from across parties and ideally representing different parts of the UK. Therefore, can I ask you to consider writing to your own local MP encouraging them to join. They can contact me at david.duguid.mp@parliament.uk and the inaugural meeting is 5pm Wed 15 January. Many thanks Sincerely David Duguid MP, Banff and Buchan Stop press: If your MP requires some basic info, you may wish to include the attached YouTube video of me talking about 22q in the House of Commons.

• Presentations from the 22q11 Europe Barcelona Meeting, November 2019
  On this page are listed the latest publications and reports that researchers from our community have published on the topic of the 22q11 microdeletion syndrome. (Nov 19)

• Great Birmingham 10K Run, Sunday 31 May 2020
  Entries for next year's Great Birmingham 10k, on Sunday 31 May are now open. The event will be staged on an exciting new course incorporating the historic heart of Birmingham and world-famous heritage sites, starting near the much-loved Hippodrome theatre in Southside. Runners will be taken through the Jewellery Quarter and past the Mailbox before it reaches its grandstand finish at Victoria Square and Colmore Row. And Raise fund for Max Appeal. Link below:

• Kiltwalk Dundee, Sunday 16 August 2020
  Kiltwalk Dundee 2019 was the biggest and best yet! 3,000 Kiltwalk Heroes took part in an unforgettable day in the City of Discovery. Kiltwalk returns to Stride, Stroll and Wander across St AndrewsDundee in 2020 and you can sign up and be a part of it right now!

• Kiltwalk Glasgow, Sunday 26 April 2020
  Glasgow 2019 was the BIGGEST EVER Kiltwalk! Thirteen thousand Kiltwalk Heroes supported over 700 charities all over Scotland, in what was an unforgettable day in Glasgow. Now get ready to do it all over again! Register NOW for Kiltwalk Glasgow 2020. And you can help raise money for Max Appeal To register:

• Kiltwalk Aberdeen, Sunday 07 June 2020
  It wasn't just the biggest, it was the BEST ever Kiltwalk in Aberdeen! Over 3,200 Kiltwalk Heroes joined us in Aberdeen for an absolutely unforgettable day this year. Now get ready to do it all over again in 2020!

• Edinburgh Kiltwalk, Sunday 13 September 2020
  The Kiltwalk in the Capital! Join in the Kiltwalk and raise funds for Max Appeal

• Virtual 22q PJ Crew PJ Party, Friday 22 November 2019
  Put 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
  Max 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
  November 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
  Book a Skydive for Max Appeal. 8th March 2020

• Ben Smith 300K Paddle Board
  A 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

• Coledale Horseshoe Max Appeal Ramblers
  The 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.

• Max Appeal Conference and AGM Birmingham 31st August, 2019
  Thank-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!
  Alex 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.

• Stay Calm Project
  The 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:

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

• David Duguid MP aks about new-born screening at PMQs
  David 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
  My 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...

• Amazon Smile
  How 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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