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Are you happy to continue?"I would like to take this time to thank Max Appeal because without finding this group I would be feeling so very alone and confused. THANK YOU MAX APPEAL."
Max Appeal Virtual Ladies NightA social evening where ladies can chat and get emotional support from ladies who care and understand. You can have a drink, alcohol, tea, soft drinks- you decide.
Unwind from the week.
Email Tracey@maxappeal.org.uk for a zoom invite.
Friday Night 8pm
22/1
5/2
19/2
5/3
19/3
2/4
16/4
Ladies Night, Friday 22 January 2021A social evening where ladies can chat and get emotional support from ladies who care and understand. You can have a drink, alcohol, tea, soft drinks- you decide.
Unwind from the week.
Email Tracey@maxappeal.org.uk for a zoom invite.
Have a Brew for 22q Virtual meetupHave a Brew Hosted by Tracey Hennighan.
Email tracey@maxappeal.org.uk for an invite.
Zoom room. Grab a cuppa and join in for a friendly chat and catch up.
Every Wednesday
27/1
3/2
10/2
17/2
Thursday 25/2
Wednesday 3/3
17/3
24/3
31/3
Virtual Have a Brew, Wednesday 27 January 2021Have a Brew Hosted by Tracey Hennighan.
Email tracey@maxappeal.org.uk for an invite.
Zoom room. Grab a cuppa and join in for a friendly chat and catch up.
Baking With AmandaBaking With Amanda
Every Thursday
Online with Facebook Live in our Max Appeal members only Group
Starts 15:00
Baking With Amanda
Who is baking with us this Thursday?
We go live in this group at 3pm on Thursdays
Any questions just ask xx
info@maxappeal.org.uk
Baking With Amanda, Thursday 28 January 2021
Online with Facebook Live
Thursday, 28 January 2021 from 15:00 UTC-15:30 UTC
Baking With Amanda
Who is baking with us this Thursday?
We go live in this group at 3pm on Thursdays
Any questions just ask xx
Max Appeal Sunday QuizSunday from 19:00 -20:00
Duration: 1 hr
Max Appeal Family quiz. If you haven't played before the more the merrier, the quiz is about 45 minutes long and is suitable for all ages, it's a great opportunity for a catch up with plenty of laughs - email mark@maxappeal.org.uk for a Zoom invite.
Max Appeal Sunday Quiz, Sunday 31 January 2021Sunday from 19:00 -20:00
Duration: 1 hr
Max Appeal Sunday Quiz, Sunday 24 January 2021
Sunday from 19:00 -20:00
Duration: 1 hr
The Sound We Found – an innovative new book for speech development'The Sound We Found' aims to encourage early sound and rhyme play, and is the first in a planned series of picture books which can be enjoyed by all children, but is of particular benefit to those with delayed speech development.
Speech, language and communication are key to a child's social, emotional and educational development, yet research shows that around 10 per cent of children and young people (over 1.4 million people in the UK) experience problems in communicating.
COVID (SARS-Cov-2) and 22q11.2 deletion - Presentation - Dr Dinakantha KumararatnePlease find the link to Dr Dinakantha Kumararatne's presentation.
50 Miles in 24 hoursThis is to raise money for the max appeal charity who help people with DiGeorge syndrome, also known as 22q11.2 deletion. This is caused by the deletion of a small segment of chromosome 22. While the symptoms can vary, they often include congenital heart problems, specific facial features, frequent infections, developmental delay, learning problems and cleft palate.
'22q Deletion Syndrome - Why we should be screening in the UK. ' WEBINAR Tuesday 15th December.'22q Deletion Syndrome - Why we should be screening in the UK. '
WEBINAR Tuesday 15th December.
Click on the link to register!
Update of 22q11 research studies from Cardiff UniversityAt 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 SyndromeTWO 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 HeroesJoin 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 22q22q 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 2020To 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 LondonThe 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 charitiesWe'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 carersThese 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 11JulyIntroduction
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 2020Weekly 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, 2020Max 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 charityCan 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 CoveringsThe 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 KeirMax 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 PassportAs 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 2.30pmEasy 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 ChallengeMany 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 2020Max Appeal Virtual Pub
Saturday 25th April 20:00
Max Appeal Family Quiz Night, Sunday 26 April 2020Max Appeal Family Quiz Night
Sunday 26th April at 19:00
Have a Brew for 22q - Virtual meetup, Wednesday 22 April 2020Have 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 2020Max Appeal Virtual Drop In session
When – Tuesday 21st April at 19:30
Where – Your Home
Max Appeal Virtual Drop in Session, Tuesday 14 April 2020Max Appeal Virtual Drop in Session
KEEP CHECKING ON OUR COVID-19 TAB ABOVE FOR INFO AND UPDATES.April 2020
Virtual Days OutLike 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 syndromeMother'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.
Johnny had an Amazing Day At Manchester Football ClubJohnny 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.
David Duguid MP 16 January 2020Delighted 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.