Young people and Adults - let us know about you!
The next APPG meeting is on 8th December and when we go to speak to the politicians we would like to have some concrete and current information to go with. So, please respond to this questionnaire. It's 10 questions about your education achievements, your work and how you live. It should take less than 10 minutes to complete. I know there's always a new questionnaire.. but you are SO interesting! Also it is important that MPs get to hear about you.
24 Hour Treadmill Run for Max Appeal
What are we doing? Sean O'Regan, Dan McNamara, Ray Humphreys and Bobby Rennoldson are aiming to run continuously for 24 hours in a relay format on the 10th December. This will mean each participant will run for 6 hours overall. As a team we are aiming to cover a minimum distance of 250km (155 miles approx.) in 24 hours. This is approximately the same distance as London to Cardiff. We are also aiming to raise a minimum of £1,000 for our chosen charity but obviously the more we can raise the better. Full details on how they got on to follow . To Donate:
Introducing Mark Tripp, Max Appeal's newest Trustree
As a family we found Max Appeal on the day that Adam was formally diagnosed with 22q11 ds, thankfully Google was kind to us that day as we typed 22q11 into a search engine, We'd had a rocky ride as a family upto this point but a 30 minute conversation with Claire Hennessy was enough to change that and start to make some sense of it all, we were determined to learn all we could early on and we were especially lucky to come onboard just as the consensus document was being launched, who would have guessed on that day it would be the first of many trips to Parliament to wave the Max Appeal flag.
22Q11 DS APPG, Tuesday 08 December 2015
The 22q11 Syndrome APPG is to meet at Westminster on the 8th December.
GOSH, National study Mental Health Needs, Tuesday 17 November 2015
Claire will be attending a Steering Group meeting on 17th November for the GOSH, national study focussing on the mental health needs of children and young people with 22q11DS. The aim of the study is to improve the information and access to care and support available to children and young people with 22q11DS.
Great North Run 2016, Sunday 11 September 2016
Max Appeal has secured a Bronze + package for the Great North Run 2016, guaranteeing 35 charity places our most ever and a marquee. Email email@example.com,uk for an entry form.
Carol Tripp is hosting a 'Have a Brew for 22q' event, 12th November in Kyrenia, North Cyprus
Carol Tripp is hosting a 'Have a Brew for 22Q' event on the 12th November in Kyrenia, North Cyprus, she hopes to have 30 plus attendees from her local craft group and they will be selling cakes and holding a raffle, the local English speaking newspaper has said they will attend too, to write a small article. Full write up below.
Overlaps....Paul Willgoss MBE...
It's time to get trekking: Four Multiday walks, one each in England, Scotland, Wales and Northern Ireland. With a rucksack on my back and a Children's Heart Federation flag waving proudly, sponsor me here: http://uk.virginmoneygiving.com/madmeanderings (as normal I pay my own travel and gear costs, every penny goes to CHF to help kids born with their heart conditions)
Young Ivy wins bravery award
Sleaford Standard Newspaper: A youngster affected by a genetic disorder has been honoured for her bravery at the Yorkshire Children of Courage Awards (in partnership with Lincolnshire). Ivy Mitchell, aged three, of Helpringham was born with 22q11 deletion or DiGeorge syndrome. The awards, run by the St James Place Foundation, were held at New Dock Hall in Leeds on October 16 and Ivy won the award for outstanding bravery in the 0-12 year category. The night featured celebrities like the Chuckle Brothers and many of the sponsors. Mum Dorne said: 'It was a privilege to be surrounded by other children that continue to smile in the face of adversity and we are proud beyond words to have our Ivy recognised for the challenges she has faced and overcome.' For full story, please follow link below
Have a Brew, Wonderworld Softplay, Kirckaldy, Sunday 29 November 2015
Sarah is organising a get togetherpartyHave a brew at Wonderworld Softplay, Kirckaldy on Sunday 29th Nov 1.30 pm to 3.30pm.
Have a Brew for 22q, Henderson Church Hall, Sunday 22 November 2015
Have a Brew for 22q Raising Money for Max Appeal Sunday 22nd November 2015 - 2-4pm Henderson Church Hall, London Road, Kilmarnock £3 entry £1 under 10's includes tea coffee and cakes Crafts and gift stalls. Please contact Max Appeal should you have any queries
Houses of Parliament - Max Appeal Family Day out - 26th October 2015
An excellent day spent in Parliament organised by Mark Tripp - thank you from us all Mark. We had the pleasure of a really interesting tour round hosted by the office of Mark's MP Alistair Burt. After walking through the massive Great Hall we met up with Alistair's staff in the meeting area where all the press interviews are done on all the news programmes on TV. From there we were taken down to the House of Lords where we saw the Queen's robing room where she is dressed prior to the State opening of Parliament and then through into the House of Lords itself.
Name the Airplane - Max Appeal
Thomson are holding a competition to name an airplane. We've got a train named Max Appeal, so lets all get voting and see if we can get an airplane too. Really easy, please click link below and press Vote. We've only got until the 16th November. Thanks.
Lotherton Hall - Max Appeal Family Day Out - 28th October 2015
A lovely a 22q family meet up today at Lotherton Hall, it would be fair to say the weather wasn't kind.... in fact it lashed it down to start off with so we had to retreat to the cafe for a coffee and a bun smile emoticon All came good in the end though, lovely people! Max Appeal regularly organises family meet up days. If you would like to help arrange something in your area, please do get in touch. firstname.lastname@example.org
Scottish Congenital Cardiac Standards - consultation now open
From 26th October to 15th December your opinions can be heard!
Sympathies to all at Cults Academy, Aberdeen
Our thoughts are with staff, pupils and their families, and the community of Aberdeen following the devastating incident at Cults Academy. Max Appeal feels a very close affinity to the school as it has been a great supporter of Max Appeal for many years because one of their former pupils, Max Lechner, was affected by 22q11DS and sadly died following heart surgery.
The Max Appeal Adam posters were the inspiration for the Dutch support group
The Max Appeal Adam posters were the inspiration for the Dutch support group's( www.Steun22q11.nl) campaign for raising awareness of 22q11. They liked the idea and made their own version to help raise awareness in Holland. They have created posters with a number of children's images and they have asked their members to share them in their local communities and raise awareness of 22q11. Good ideas spread far and wide.
Brussels 10th & 11th October 2015 Relais 22 European Conference
Paul and Julie Wootton landed in Brussels on a very bright and sunny October morning ... and found that Airforce 1 was parked up just the road, and wondered if Barack would be joining the European Network conference being held by Relais 22, which is the French speaking group in Belgium. Claire Hennessey joined them later.
Max Appeal Parents conference for 22q11 DS, Saturday 05 December 2015
We will have representatives from the Cardiff 22q11 DS Clinic, information on research studies from Cardiff University and Great Ormond Street Hospital for Children, as well as other professionals expert in the management of 22q11 DS. We expect the programme to begin from around 9.00am and finish by 5.30pm.
Max Appeal 2016 Calendars and Wall Planners
It's that time of year again !!! Can we ask for you to send in your photo's of your 22q cuties please. We need a minimum of 1MB in size please. Lifting off facebook is no good because the resolution is not of printable quality. Email jpegs (or any other type of picture file), but don't embed in a document or an email. Please state if they have a preferred month. Last year we had about 170 pictures submitted, so we can't guarantee that your picture will be used. We leave it to the graphics people to choose so that it is completely non-preferential. Please email to email@example.com For our newer members: for the last few years Max Appeal has produced a yearly calendar and wall planner using photo's of our wonderful beautiful 22q kids. We send one of each out to all our members free. They look fantastic !!!! CLOSING DATE : 30th October 2015
Check out Amy Maiorano YouTube Video...Does 22q in the style of Taylor Swift's 22
Amazing music video by Amy Maiorano doing 22q in the style of Taylor Swift's 22.
Sarah reports on another Research Project Experience
On Wednesday 16th September 2015 I had the pleasure of meeting with Doctor Maria Rogdaki who came to our house to interview me for a 22q research project. Maria is part of the Psychiatric Imaging Group at Kings College London, and her research project is looking for male and female volunteers aged between 18 and 65 to participate. They are particularly looking for carriers of the 22q11 deletion syndrome.
Morrisons Great Birmingham Run, Sunday 18 October 2015
Morrisons Great Birmingham Run - Sunday 18 October.
Many of you will be aware that there poor fundraising practices have been in the press in recent times. The review of fundraising has been published today and we have attached it here. Max Appeal welcomes this review, and will continue to strive to maintain integrity in all aspects of fundraising.
Jeans for Genes Day today!
Max Appeal is participating in Mediaplanet Uk's 'Genetic Disorders' campaign in The Independent newspaper and online. See our involvement and find out more on the attached link.
Independent Newspaper 18th Sept 2015
See Max Appeal in the national press gain! The Independent Genetics Disorders supplement carries this publicity advert as part of the jeans for Genes day. As we know awareness is vital to ensure that people with 22q11DS get the services and help they need.
Great North Run 2015
Great North Run.. team Max Appeal were mobilised and ready to face the challenge on the 13th September. We had Archie Wootton taking part in the Junior Run (5km) We had almost 30 runners enter and what a team! They've raised £14.5k already. Can't 'big-up' their efforts enough. Thank you to all of you. Names and times will be added asap:
Jeans for Genes
Wear your jeans on Friday 18th September in support of Jeans for Genes Day. Max Appeal is one of the charities being supported through this year's appeal. Genetic Disorders UK will be funding a parent conference for Max Appeal parents / carers on Saturday 5th December at Cardiff University. Look out of more details about the day in our next newsletter and on our website. Mention Max Appeal if your local school, work place or community centre is supporting the day. Look out for the Max Appeal article in the Independent supplement for Genetic Disorders Campaign 2015 on Friday 18th September. '
Max Appeal Family Fun Day on Scarborough Beach
Writes trustee Martin Kennedy: 23rd August was a brilliant day on Scarborough Beach. Great turn out with old and new friends. Enjoyed every minute with the Max Appeal family.
Leah and Sarahs 22q11DS Research at Cardiff University
In August both Leah and I went to Cardiff University to take part in the research for 22q11 Deletion Syndrome This was Leahs third participation in taking part in questionnaires and games.
Special Thameslink train raises £9,000 for health charities
'Thameslink Tracker cheque': (from left) Thameslink timetable planner Matthew Dodd, Ashley Westpfel of The Royal Brompton & Harefield Hospital, Rachel Williamson of the Royal Marsden Hospital, Mark Tripp and Claire Hennessey of Max Appeal and Charles Horton, Chief Executive of Govia Thameslink Railway which operates Thameslink trains.
Mary's trip to Japan (& Maxi Bear went too)
On the 24th July 2015 I left Bristol to go on a journey of a lifetime. On the 23rd my mum dropped me off at Woodhouse Park in Bristol with my Unit in which I would be spending 2 and a half weeks with them in Japan. After 2 years of planning it had finally arrived.
Max Appeal Christmas Card Competition 2015
Well you probably don't want to be reminded, but it's only 19 weeks to Christmas! We would like to offer some new Christmas Card designs for the coming festive season. Can you help?
Shuttleworth Air Museum Max Appeal Family Day out - 11th August 2015
The Shuttleworth meet was a huge success and enjoyed by all who came, the day started at 10:30 with the kids enjoying the outdoor play area and getting some of their energy out of their systems. Well at least that was the plan but after a leisurely picnic sat watching the airplanes and helicopters come and go the kids showed their endless energy by visiting the museum and walking around the Swiss Gardens. I'm pleased to say that Max Appeal appears to have found a little gem in the Bedfordshire countryside.
Newscatle University, Australia
Go to our research page to find out more:
Max Appeal Train - First Year Anniversary
The 25th July saw the first anniversary of our Max Appeal train... who could believe a whole year has elapsed since we named her after Max Appeal. Let's hope her journeys in and out of London have made alot more people aware of 22q11 DS. Please use your opportunities to raise awareness of 22q11 DS.
NEW STUDY with GOS
We would ask you to participate in the on-line forum to inform us about your experiences as a parent/carer of a person with 22q11DS about access to services and mental health issues.
Adult Management Guidelines
First published in January 2015!!
What is the prevalence of 22q deletion in the population?
A new study published in June 2015 in the scientific Journal "Prenatal Diagnosis" based on over 9500 prenatal testing samples suggests that the previously stated prevalences of 22q11.2 deletion and duplication syndromes are hugely under-estimated!
National Congenital Heart Disease Audit - Patient and Family survey
We have been asked to help gather information for this project: Congenital Heart Disease (CHD) affects around 1 in every 100 children born around the world, one third of whom require an intervention during infancy.
22k for 22q Dublin, Sunday 2nd August 2015
Join Team 22k for 22q Dublin - An amazing international group of runners, walkers, and volunteers raising awareness for 22q11.2 deletion and duplication syndromes by participating in the Dublin Rock-n-Roll Half Marathon 22k or Fun Run 3k on August 2, 2016 on the beautiful Emerald Isle! This collaborative venture is supported by 22q Ireland, the 22q11.2 Society, Max Appeal, and the International 22q11.2 Foundation, Inc..
Have a Brew for 22Q!
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.
Thank you to all of our Max Appeal Fundraisers...
Don't forget to check out our fantastic Max Appeal Fundraisers... We thank you all so much for what you do for Max Appeal.
Education and Healthcare Experiences questionnaire
We are trying to find out about the educational and healthcare experiences of people diagnosed with 22q deletion syndrome. Are you an individual with 22q deletion syndrome and over the age of 16? Or are you a parent or carer of a person who has 22q deletion syndrome and is any age? If so, we would like you to complete a survey.
Order your very own special collection of chrysanthemums prepared by John Bawden, Head Gardener at Coombe Lodge, Blagdon and Chelsea Flower Show winner. John has prepared these plants especially for Max Appeal. All proceeds are being donated to Max Appeal. Order via the Max Appeal Shop.
Cardiff University Looking for 22q Adults
Cardiff University's ECHO study has been learning about the experiences children with 22q11.2 deletion and duplication syndromes for the past five years. In addition to child volunteers, we are now also looking for adults with the 22q11.2 deletion or duplication to take part.
Bristol to Bath Marathon, Sunday 25th October 2015
This brand new marathon for the South West, begins in Bristol, the vibrant city of Bridges, Brunel and Banksy, through the stunning South Gloucestershire countryside, ending victoriously in the elegant Roman Spa city of Bath. Step up the pace and make history as you run city to city in the inaugural Bristol + Bath. Run for Max Appeal. Entries now open. Email Paul@maxappeal.org.uk and confirm your entry.
Has your child been ill with flu over the past few years?
Has your child been ill with flu in the past few years? Researchers at the University of Oxford are interviewing parents and carers of children (aged 6 months to 12 years) with heart problems and other long-term conditions/disability. They want to find out about parents' experiences and treatment needs when their child has fallen ill with flu. This work is funded by the National Institute for Health Research (NIHR). The major outcome of the project will be a new section on www.healthtalkonline.org to support and provide information for other parents. The site gives voice to parents and offers parents the opportunity to hear from others in a similar situation.
Study into the Cultural Effects of 22q deletion
The University of Newcastle in Australia has re-opened this questionnaire! We are interested in cultural effects and would like more parents of children with 22q11.2DS/VCFS/DiGeorge syndrome to be involved, particularly if you're from the UK, Europe and Australia.
Institute of Psychiatry looking for brain study volunteers
Institute of Psychiatry are looking for willing volunteers for their brain study. Clodagh Murphy is a name that some of you will recognise, she is a big supporter of Max Appeal and keen as mustard on 22q. Advancing studies is an important way to improve knoweldge of the condition, so please do sign up if you can. Thank you! Click on the image to make it appear in full size.