The Sound We Found – an innovative new book for speech development

A new 'listen and look' book designed to help facilitate speech sound development in babies and young children has been published by three Speech and Language Therapists (SLTs).

The sound we found
'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.
The three authors - Rhian Hoccom, Lisa Farquhar and Hélène Somerville - are all Highly Specialist Speech and Language Therapists and have used their shared knowledge and experience to create a book that also doubles as an educational resource which can be used by parents and families to reinforce speech sounds in their children.

They say: 'Young children learn sounds through hearing them regularly. Early intervention is the key to minimising speech sound difficulties and was the starting point for us coming up with The Sound We Found. Targeting sounds at the earliest opportunity encourages correct speech patterns and discourages speech errors which can become ingrained and difficult to resolve. Involving parents and carers, who spend the most time with the child, is crucial to the process'.

Based on therapy techniques used by SLTs, The Sound We Found enables children to hear and see how sounds are made, without any pressure to repeat them. Through regularly sharing the book, sounds are repeatedly modelled to the child who may then attempt the sounds of their own accord. The book also provides an example of how sounds can be reinforced throughout the day during play and daily routines.
With a shortage of speech and language therapy provision and increasing waiting lists in the NHS, the release of The Sound We Found could not be more timely. Although two years in the making, this book is being published at a time when parents and carers are in greater need than ever of advice and resources to help them to develop their child's speech.
During the recent pandemic, SLTs have had to find innovative ways of working, such as the use of telehealth to deliver therapy. However, not all Health Boards have been able to offer this and for those that have, the use of technology has automatically excluded some families from accessing the help they need, particularly those from disadvantaged backgrounds. As Services are looking at ways to return to a more typical way of working, they may not be able to operate at full capacity and school visits and clinic appointments are likely to be severely restricted. Safety requirements will make the delivery of therapy difficult and the use of face coverings in some settings, will make modelling speech sounds nigh on impossible.

The authors highlight the benefits of the book as a form of early intervention, while also recognising the importance of promoting a love of books in children.

'Sharing books with your child will activate their imagination, expand their understanding of the world around them and help them broaden their vocabulary and listening skills.'

'The Sound We Found can be used as a standalone tool to help parents foster correct speech patterns, as well as being a visually stimulating story book, and when you buy the book you get a QR code which gives you access to a supporting website and video explaining how it can be used to maximum effect.'
Published by Burton Mayers Books, The Sound We Found is released on 23rd October and is available for pre-order online through several retailers including Amazon, Waterstones and Foyles.

Follow the authors on @ListenAndLookB1

COVID (SARS-Cov-2) and 22q11.2 deletion - Presentation - Dr Dinakantha Kumararatne

Slides courtesy of Kathleen Sullivan (CHOP) and Hilary Joyce (MaxAppeal)

presentation picture
Please find the link to Dr Dinakantha Kumararatne's presentation.

50 Miles in 24 hours

Lee Davenport is raising money for Max Appeal

Lee Davenport
This 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.

50 miles in 24H
This 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.

My son Lewis has the syndrome so day to day life can be very challenging for us all so hopefully by raising as much money as I can we can help people who need it the most.

Saturday 14th December 2020 0800

I'm taking part in a 50 miles in 24 h TAB (Hiking) challenge!

So the the idea is i will TAB (Hike) 50 miles in kit starting from the Bovington area and around the Dorset area.

This is to raise money for the Max Appeal, a charity very close to us as a family.

The Break Down

50 miles in 24h

Pace around 20 min per mile considering the distance.

With 10 mile stops in between.

Tabbing in issued kit.

No more then 15 KG (food water etc)

September 2021 Half Marathon

Thank you all for the continued support in these challenging times.
https://www.justgiving.com/fundraising/leedavenport?fbclid=IwAR1_ZYy91ChLwJm6WUx5bhLt7Ttg-uRta5NKwH-LuC7uIIFbxY0Zj44V0yA

“22q Deletion Syndrome - Why we should be screening in the UK. “ WEBINAR Tuesday 15th December.

Hosted by Natera

Natera
'22q Deletion Syndrome - Why we should be screening in the UK. '

WEBINAR Tuesday 15th December.

Click on the link to register!



https://register.gotowebinar.com/rt/3514062663334734091?fbclid=IwAR1fG1Amppyur_1Dd1o8-O7Va0Lf7-B4wZjP3PzR5nT1uSZsMV-p3hgHC6c
Agenda:
1. Patient and Family Perspective -- Speaker: Martin Kennedy, Max Appeal
2. Why Should We be Screening in the UK -- Speaker: Dr. Bryan Beattie, MD FRCOG, Consultant in Obstetrics and Fetal Medicine
3. Genetics and Test Performance -- Speaker: Dr. Samantha Leonard, MBBS BSc (Hons) MA PhD MRCPCH, Senior Medical Director International at Natera, Inc.
4. Q&A

In our 40 minutes webinar, followed by a Q&A session, you will learn about:
• The impact of 22q11.2 deletion diagnosis on parents and families and how the Max Appeal Charity Organization can support.
• How to supportively counsel your patients regarding prenatal screening and diagnosis, key facts and clinical implications of 22q11.2 deletion syndrome.
• Genetics of 22q11.2 deletion syndrome, clinical experience and prenatal screening.
register.gotowebinar.com

Update of 22q11 research studies from Cardiff University

Cardiff Univ research
At today's AGM Dr Sam Chawner presented information from Cardiff University's research.

Special Drop in Session - Mental Health and 22Q11 Slides

3rd November 2020

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

Maxen
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.
https://www.nwemail.co.uk/news/18876189.iconic-south-cumbria-buildings-light-red-support-boy-digeorge-syndrome/
The six-year-old pupil at Dalton St Mary's has Digeorge Syndrome, a condition which is thought to affect one in 2,000 people.

Mum Caroline Shaw, 32, of Baycliff in Ulverston, said her son's condition was a syndrome not many have heard of and involved learning and behavioural problems, heart problems, hypocalcemia and a low immune system.

Mrs Shaw and her husband Thomas, 40, who run Shaw Plant Training Ltd together, already had their three children Jamie, now 15, Olivia 13, and Daniel nine, but nothing prepared them for health battles they would face with Maxen.

"We had no inkling at all," said Mrs Shaw, who moved to Ulverston from Sheffield.

"The only thing that was picked up on my scans was that I had excess amniotic fluid which we later found out can be a sign of the baby having a heart condition."

When he was three days old it was discovered that he had a heart murmur, and during a scan the doctor made a startling discovery.

Caroline said: "The doctor looked at the screen and said 'I don't understand it, he's not compatible with life', and those words completely turned our lives upside down.

The young tot was rushed to intensive care, but after a number of scans they were told it was not as serious as first thought and was allowed to go home.
Mrs Shaw said: "They said look, he has got a heart problem and you need to look out for blue spells and we were petrified.

"We were taking this newborn home, and we were experienced parents from having three other children with no problems, but bringing a child home that could potentially just die on us scared the life out of us.

"We didn't sleep at all. I was on one watch and my husband would cover the next watch to see if he would turn purple or blue and he would need to be blue lighted into hospital."

Maxen would finally get a diagnosis of Digeorge Syndrome after being admitted to hospital shortly after with 'ticks', which developed into a seizure.
However, there are approximately 180 problems that could present in someone with Digeorge Syndrome.
Mrs Shaw said: "November 22 is Digeorge Syndrome awareness day. The charity, The Max Appeal, asked people to contact their local council to get places lit up red.

"I thought I'd get in touch with the council and the Roundhouse Cafe and they agreed to do it.
"The community have been absolutely fantastic and we try to spread as much awareness as possible because it is a syndrome that is unheard of yet it is so common."

The Mail 17Nov2020

2020 Annual General Meeting, Sunday 29 November 2020

To all our members,

Xmas Party Heroes

Has Covid Cancelled your Staff Christmas 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
TO BECOME A HERO AND BE PART OF SOMETHING THIS FANTASTIC, ALL WE ASK IS THIS:

Choose the charity & your pledge amount (add a zero on for luck)
Notify us of the pledge amount via the contact us page
Either pay your existing chosen charity directly or choose a charity and pay your donation via our mobile app donation partner Thinking of You the place where charities benefit more. Download the app here
Share the news of becoming Xmas Party Heroes on your social channels
Make sure you use the hashtag #xmaspartyheroes and share the amount
https://xmaspartyheroes.co.uk/

Vicky Ford MP Parliamentary Under Secretary of State for Children and Families 9 November 2020

Vicky Ford MP Parliamentary Under-Secretary of State for Children and Families 9 Nov 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

poster
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.

Have a Brew for 22q

table top
Get together, invite all your friends and family, set the date, put the kettle on and get the cakes in the oven. It's as simple as that.

Whatever you need to make your event a success, give us a call or drop us an email, as we have loads of goodies to help your Max Appeal 'Have a brew for 22Q' go really well and help make money for Max Appeal.

kit
'Have a Brew' pack. Will include, 6 balloons, 6 cake toppers, A3 poster, bunting and money box.

To register your event and request your free pack;

Contact; steph@maxappeal.org.uk Please send your name contact / address.

Additional items to make your tea party even more special will be available to order soon.

Additional bunting and posters can be downloaded from our website.

If you would like the money box pdf, please email me at steph@maxappeal.org.uk

22Q11 Awareness Weekend 21st/22nd November, Saturday 21 November 2020

Come Join us...

Awareness
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

Investigating the impact of the Covid 19 pandemic on mental health and wellbeing in families of children with rare genetic and neurodevelopmental disorders.

CoIN
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

South Wales and South West Congenital Heart Disease Network Annual Report for 2019-2020

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

https://www.swswchd.co.uk/en/page/key-documents
You can also access it on the network website by clicking below. This report draws together the progress that has been made within the network over the year, highlighting the achievements, challenges and future plans for the network and its CHD centres. Thank you to everyone who has contributed to this report. We hope you enjoy reading it.

If you have any queries or have suggestions for future reports please do let us know.

With kind regards,
The CHD Network team

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.

Catch up if you missed the online session about returning to school

Wellchild organised for a number of professionals to come together to discuss the issue.
https://www.wellchild.org.uk/2020/08/20/back-to-school-webinar-addresses-key-questions-for-families-of-seriously-ill-children/

Join My Prudential Ride London to help save the UK’s charities

Help Raise Funds for Max Appeal

Prudential
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.
The Covid-19 pandemic has had a devastating impact on charities, with the UK charity sector facing an estimated £10 billion shortfall in funding. Max Appeal is no exception, as we have seen our income drop over the last six months and many of our fundraising events cancelled.
Thousands of fundraising events across the country are cancelled, including Prudential RideLondon: the world's greatest festival of cycling, which has raised more than £77 million for thousands of charities since it began in 2013.
While it can't go ahead as planned this year, we are keeping the wheels moving and celebrating the festival weekend of 15 and 16 August with a virtual event: My Prudential RideLondon.
Its aim is to inspire and engage everyone, of all ages and abilities, to get on their bikes, scooters, skateboards, trikes, tandems, penny farthings, unicycles – in fact any form of non-motorised wheeled transport! – to raise much-needed funds for their favourite charities.
We'd love you to be a part of it – just follow these four simple steps:
1. Register: visit myridelondon.co.uk and select your challenge. There are three cycling distances to choose from, or you can invent your own My FreeCycle wheeled challenge over 1km.
2. Fundraise: set up your fundraising page and let people know you're supporting us so they can sponsor you.
3. Participate: set your wheels in motion and complete your challenge anywhere, at any time, over the weekend of 15 and 16 of August!
4. Nominate: encourage your family and friends to take part and help save the UK's charities. Spread the word on social media too by using the hashtag #MyPRL when posting about the event.
You'll find more information, ideas and inspiration, as well as advice on staying safe and cycling responsibly on the road, at myridelondon.co.uk. It would be wonderful if you email us at info@maxappeal.org.uk to let us know you have registered.
We hope you'll be part of the world's biggest festival of cycling to support Max Appeal and help save the UK's charities.

Best wishes

Chair of Trustees Max Appeal

New App now released

We're delighted to announce that the free My Prudential RideLondon app is now available to download, ready for the event this coming weekend 15 and 16 August.

Any fundraisers who have not yet registered can do so quickly and easily through the My Prudential RideLondon app – they can set up their Virgin Money Giving fundraising page from there too.

Getting ready to ride
By inputting the GPS ID that they email to riders when they registered, you can track and time your My Prudential RideLondon challenge and access all the other benefits the app offers.

Follow friends and family
Friends and family can also download the app for free and use it to follow the riders' progress on the virtual Prudential RideLondon 19, 46, 100 or FreeCycle route maps.

New 'donate now' button
Supporters will also be able to get donations direct to Max Appeal thanks to the app's Donate button – making it even easier to raise funds.

Celebrating success
They want My Prudential RideLondon to really celebrate the spirit of the world's greatest festival of cycling, so the app includes a variety of selfie frames that riders can use to show the world what they're up to on social media, using the official hashtag #MyPRL.

Once riders have completed their challenge, they will unlock additional frames that celebrate their achievement, as well as their all-important finisher's certificate to download and print.

For an overview of all these exciting features and to see the app in action, check out our short animation.

You and your supporters can download the app via the buttons below.


We hope that you have a great My Prudential RideLondon weekend!
https://apps.apple.com/gb/app/my-prudential-ridelondon/id1258105015?_cldee=Y2xhaXJlQG1heGFwcGVhbC5vcmcudWs%3d&recipientid=lead-83bfafb1fec7ea11a812000d3a86b5bd-dcca5dd01f3c484e915a0c25ff99de96&esid=72b9ce88-badb-ea11-a813-000d3a86d7a8

IPSEA training via Zoom for parent carers

Online Zoom Sessions

ipsea
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.


https://www.ipsea.org.uk/Event/ehcp-masterclass-obtaining-a-plan-16-july
• EHCP Masterclass: Obtaining a plan 16 July


The training covers the following topics:
• How to obtain an education, health and care plan
• What should an education, health and care plan look like?
• What information should a plan contain?
• What should I do if I am not happy with the plan?
• How to appeal to the Special Educational Needs and Disability Tribunal
A member of our legal team will present the session live and it will still be possible to ask questions as if it were a face to face session.
• EHCP Masterclass: Existing plans 30 July
https://www.ipsea.org.uk/Event/ehc-plan-masterclass-existing-plans-30-july
The training covers the following topics:
• What should an education, health and care plan look like?
• What information should it contain?
• What to do if you're not happy with a plan
• Using the annual review
• Requesting re-assessment
• Appealing to the Special Educational Needs and Disability Tribunal
https://www.ipsea.org.uk/Event/ehc-plan-masterclass-existing-plans-30-july

BCCA updated practical guidance for patients, parents, charities and support groups 11July

British Congenital Cardiac Association

BCCA
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

Max computer
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 computer
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

Help Support Max Appeal

mfg
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.
https://movementforgood.com/#nominateACharity

Face Coverings

Covid 19 Face Coverings

sock mask
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 Covid 19 13th May 2020

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

The Abilities in Me

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/

https://www.theabilitiesinme.com/

Max Appeal Hospital Passport

Hospital Passport

Medic
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

Max Appeal Family Back off - Come and Join in

tripps 17
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

Save the UK's Charities

Max Appeal logoMany 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.
This a challenge for all ages and abilities, the idea is to think of an activity based around the numbers 26 or 2.6 and be as creative as you can whilst staying safe and adhering to social distancing guidelines

The options are endless, here are a few ideas, or go to https://twopointsixchallenge.justgiving.com/inspiration

Physical challenge: Run or walk 2.6 miles in your garden, do 26 minutes of yoga, or 26 press ups.

Mental challenge: Learn how to say 26 in 26 new languages.

Family challenge: Bake and decorate 26 cupcakes and then eat them!

Sign up join the challenge via:





https://twopointsixchallenge.justgiving.com/get-involved?charityId=182527&mkt_tok=eyJpIjoiT1RnM09EazROekpqWXpGaSIsInQiOiJtRW4wcGJVNTRkaEliaXFNY0J4b2gxdGhwNklMNFwvK2FkMklZbW9zaDFsVWRVZW9PSk1qOEQ5MXNycm5LM21HcUdtNnV5b29VQ2ljTTNRMGlySEg4ckZKWnZKd0F1dzQxSzcrS
Share your pictures or videos on social media using the official hashtag #TwoPointSixChallenge to be part of the campaign. Then nominate someone else to take on The 2.6 Challenge!

We hope you'll join the nation in The 2.6 Challenge to support Max Appeal and help to save the UK's charities.

Best wishes
Julie Wootton
Chair of Trustees Max Appeal

Max Appeal Virtual Pub, Saturday 25 April 2020

Join us...

pub sign
Max Appeal Virtual Pub
Saturday 25th April 20:00

Max Appeal Family Quiz Night, Sunday 26 April 2020

Join us...

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

Have a Brew for 22q - Virtual meetup, Wednesday 22 April 2020

Virtual Have a Brew for 22Q

tripps 17
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

zoom photo
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

Max computer
Max Appeal Virtual Drop in Session

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

KEEP CHECKING ON OUR NEW COVID 19 TAB ABOVE FOR UPDATES AND INFO

nhs  image
April 2020

Virtual Days Out

Virtual Days Out

Lapwings canoeing
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

header logo
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

Cranham Youth Camp 28th to 31st May 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

Latest Government guidance on COVID-19 as at 13th May 2020

We hope the following attachment is helpful.

Information from International 22q11.2 Foundation newsletter

COVID - 19 video update
Dr. Sullivan is the Chair of Allergy and Immunology at the Children's Hospital of Philadelphia and Professor of Pediatrics at the Perelman School of Medicine of the University of Pennsylvania. She is a world-renowned clinician and researcher with specific expertise in the chromosome 22q11.2 deletion and duplication syndromes. Dr. Sullivan also leads an international special interest group including Immunologists from around the world, all of whom are concentrating on chromosome 22q11.2 differences, through the 22q11.2 Society.

If you have any concerns about COVID-19 or any aspects of your health, please check with your healthcare provider.
Thank you.
https://primaryimmune.org/news/covid-19-update-video-march-18

SEND Open letter from Vicky Ford, Parliamentary Under Secretary of State for Children & Families.

Please find attached an open letter to children and young people with Special Educational Needs and Disabilities (SEND), their parents, families and others who support them from Vicky Ford, Parliamentary Under Secretary of State for Children and Families. The letter signposts key Covid-19 guidance published over the past week.

British Congenital Cardiac Association 18 March 2020

Updated statement regarding the Coronavirus.
https://www.bcca-uk.org/pages/news_box.asp?NewsID=19495710

Ordering supplies of medication

As at any time it is important to ensure you order any medications in good time, rather than wait until the last minute to request a prescription.

Impact of Coronavirus on 22q11 patients. Message from Prof. Eliez.


The coronavirus crisis will most probably have an impact on the supply of pharmacies in the coming months.


Indeed, a large number of drugs are produced in China and it is very probable that there will be supply difficulties. People with microdeletion 22 who are taking a neuroleptic and / or serotonin reuptake inhibitors (anxiolytics, antidepressants) should be sure they have enough medication for the next three months.


Abrupt discontinuation of neuroleptics or serotonin reuptake inhibitors is likely to cause rebounds of psychotic symptoms or even anxiety symptoms increasing the risk of psychosis in people who are affected by microdeletion 22.



European Society for Immunodeficiencies latest information on Coronavirus (COVID-19)

ESID
Please refer to the document published by the European Society for Immunodeficiencies 1st update as at 10th March, 2020 on the COVID-19 Coronavirus.

Also refer to national and local public health authorities advice as stated in earlier updates.

Advice relating to the Coronavirus (COVID) for those affected by 22q11 Deletion Syndrome. 7th March, 2020.


Image: social_static_1080x1080_v21[1]_medium.jpg
Max Appeal has received the following guidance in the attached document.

Do keep updated by also regularly looking at the NHS website and information.





Coronavirus Advice Updates

Velo Birmingham & Midlands, Sunday 21 June 2020


Image: velologofc[1]51715596_medium.png
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

MCFC Johnny
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

Great North Run

GNR 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

APPG

APPG Jan 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

Research Study

Cardiff Univ research
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.

Research has shown that people with 22q11.2 deletion syndrome can wait up to 20 years for a genetic diagnosis. We are interested in speaking to parents and carers of people affected with the condition, and hearing their experiences of the UK healthcare system. We are particularly interested in learning about your journey towards obtaining a diagnosis for your child, and how this could have been improved. The information collected could inform healthcare practice in the future, and improve the support given to families.

The research would involve a 1 hour long interview with a researcher, with no further commitments after this. This can either be done online via a video call, over the telephone, or in person somewhere local to you. It is up to you how you would prefer this to be done. This interview will ideally take place before February 2020. Short segments of what you say may be quoted in the results, however, your name, or any other personally identifiable information will never be mentioned.

This research is being undertaken by Hannah Knight, an MSc student in Genetic and Genomic Counselling at Cardiff University, under the supervision and guidance of Dr Michael Arribas-Ayllon, a social scientist at Cardiff University.

If you are interested in the study and/or wish to find out more, please contact Hannah Knight, at KnightH2@cardiff.ac.uk and we will be happy to answer any questions you may have. If you then wish to take part, we will send you a Participant Information Sheet with further information about the study, as well as a consent form.

(Jan 2020)

22q At the Zoo 2020, Sunday 17 May 2020

TICKETS NOW AVAILABLE.

zoo logo
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

APPG Message from David Duguid MP January 2020

APPG logo
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.
https://www.youtube.com/watch?v=jl379VfPEqM&feature=youtu.be

Presentations from the 22q11 Europe Barcelona Meeting, November 2019

SCIENTIFIC PUBLICATIONS

22q europe
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)


https://22q11europe.org/research-information/scientific-publications/?fbclid=IwAR2wBB79mBL0ecAwJuvzVpkBTlGJHJl6XhL5nYg1lbn0NRZyYfeh39bKqRU

Great Birmingham 10K Run, Sunday 31 May 2020

Great Birmingham 10K

great birmingham 10k
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:
https://www.greatrun.org/great-birmingham-10k?utm_campaign=GB10K_PROSP_18_DEC_19&utm_source=emailCampaign&utm_content=&utm_medium=email&eid=AJ923919455782103510641005545186

Kiltwalk Dundee, Sunday 16 August 2020

Sunday 16th August 2020

kiltwalk
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!
https://www.thekiltwalk.co.uk/events/dundee/

Kiltwalk Glasgow, Sunday 26 April 2020

kiltwalk
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:
https://www.thekiltwalk.co.uk/events/glasgow/

Kiltwalk Aberdeen, Sunday 07 June 2020

Sunday 7th June 2020

kiltwalk
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!
https://www.thekiltwalk.co.uk/events/aberdeen/

Edinburgh Kiltwalk, Sunday 13 September 2020

Sunday 13 September 2020

kiltwalk
The Kiltwalk in the Capital!

Join in the Kiltwalk and raise funds for Max Appeal