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 A charity train chartered by Thameslink for rail enthusiasts has raised £9,000 for three very worthwhile causes. The Royal Marsden Hospital, Royal Brompton & Harefield Hospital and childhood illness support organisation Max Appeal were each given £3,000 at a ceremony organised by Thameslink timetable planner Matthew Dodd, 28, who dreamed up the trip after members of his family were treated at the hospitals. Matthew, of Knebworth, said: 'The trip was a huge success with 170 paying passengers on board, which has made a lot of money for three very worthwhile causes.' The 'Thameslink Tracker' trip between Bedford and Blackfriars in a Class 319 train took in among other places Bedford Cauldwell Depot, Bedford Jowett Sidings, Luton Crescent Road and Herne Hill Sidings – which were sought-after spots for rail enthusiasts. Chris Green, renowned among rail enthusiasts as the man who launched Network SouthEast to unify London suburban rail services, joined the trip and helped raise money by signing brochures for as much as £5 each! And a raffle, featuring prizes including a VIP ride on Thameslink's train simulator, raised a further £1,000 while the privilege of riding back in the cab was 'sold' for £319 (in honour of the Class 319 train they were in). Matthew organised the event with the help of the railway enthusiasts' Branch Line Society, Network Rail and other colleagues, including driver manager Andrew Murdin, drivers Martin Barter and Adrian Hewitt and on-board services manager Colin Latimer. The rationale for choosing the three charities was that The Royal Marsden is on Thameslink's Wimbledon/Sutton rail route and treated Matthew's father-in-law for cancer; Matthew's brother has had two open heart operations at Harefield Hospital; and Max Appeal helps children with the genetic condition '22QDS', such as nine-year-old Adam Tripp, son of Great Northern driver Mark Tripp.
Mary's trip to Japan (& Maxi Bear went too) 2015
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. We had to wake up at 1:30 to catch a bus at 2:00 to travel down to Heathrow Terminal 2 airport. Are flight was at 9:15am but we arrived there at 4:30am
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.... if you would like to enter a festive design which could be chosen as part of the Max Appeal 2016 Christmas Card series please produce your design on an A4 sheet of paper and put your name, competition group and contact details on the back of the picture. Please send to Freepost Max Appeal. Closing date for entries is 30th September, 2015. The competition groups are; Group A - Up to 11 years Group B - 12 -17 years Group C - 18 years and over
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.
Aaron Cooks' first snooker tournament of the season
Aaron Cooks' first snooker tournament of new season. It was pro am at South West Snooker Academy. Aaron has been practicing hard had a 72 break today. Aaron is playing in at least 50 competitions this season travelling all over the UK and even going to germany to play. We will keep you all updated to how he does and he's proud to show off the max appeal logo every time he plays Cheers for all your support he deserves a good season after all his effort in practice.
Shuttleworth Air Museum, Tuesday 11 August 2015
Mark and Kelly Tripp would like to invite you all to a day at Shuttleworth Air Museum on Tuesday 11th August, it is situated approximately 2 mins from Biggleswade junction of thee A1m in Bedfordshire.
Brighton Beach Family Meetup, Saturday 29 August 2015
Brighton Beach Family Meetup. 29th August 2015 at 12pm
Vote for Max Appeal - Just Giving Charity of the Year.
Why not help Max Appeal by nominating them for charity of the year with Just giving. The JustGiving Awards return to the UK this September and the hunt has begun to find our next Charity of the Year AND the Most Popular Charity Campaign – a new category for 2015. The winner and two runners up for each award category will be announced at our JustGiving Awards ceremony on Wednesday 23rd September 2015. Plus, we've got £1,000 donations up for grabs for the winners and £500 donations for the runners up! We've got until Sunday 23rd August 2015 to cast as many votes as you can. visit http://just.ly/charity-award to cast your vote! Please feel free to share and ask your friends and family to vote too.
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.
Tunnel 2 Towers Race
Great effort on Sunday by everyone involved and fantastic fundraising of £1000 for Max Appeal. Hannah's full story of the event is on our fundraising pages.
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!!
Max Appeal Youth Weekend - round up!
Our youth weekend at Cranham Scout Camp in Gloucestershire is becoming a bit of a Max Appeal tradition. We were however missing one key ingredient this year (on 23rd to 26th May), our camp leader Simon Lonsdale, as he was whisked away on other important duties at short notice. However Caroline Lonsdale, Guy Wyatt, Helen and Chris Meldrum, Martin Kennedy and Claire Hennessey stepped in to ensure a good time was had by all.
Lee & Mark Mitchell's Miles Fundraisers for Max Appeal
We are now currently 4 events into our Fundraising Challenge for Max Appeal with 2 left to go. At the beginning of 2015 we set ourselves 2 goals one was to complete 6 unique challenges and the other was to raise awareness for 22Q11DS and a minimum of £5000. As of right now we are on track to successfully complete the goals.
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.
Visit to the Palace of Westminster, Monday 26th October 2015
The Rt Hon Alistair Burt MP, Minister of State for Community and Social Care at the Department of Health has kindly arranged a Tour of the Palace of Westminster.
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..
Coast to Coast, Thursday 18th June 2015
Coast to Coast Cycle Ride, part of Lee Mitchell's Challenge Series of Fundraisers.
Record fundraising totals from tRAILblazers benefits Max Appeal
tRAILblazers topped their fundraising record on this year's sponsored walk along the line once used by the Atlantic Coast Express.
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.
The Tunnel to Towers run/walk, Sunday 19th July 2015
Have you ever wanted to contribute a little back to Max Appeal to help fund next years Zoo day or Camp etc etc, well here's your chance plus another meet up opportunity. Below is a link to the tunnel to towers runwalk on Sunday 19th July.
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.
Summer Outing Scarborough Beach, Sunday 23rd August 2015
Enjoy a day at the beach with other Max Appeal families. Beach day is becoming an annual tradition so if you haven't tried it then please join us this year for an informal fun day. Further details nearer the time, on where to meet and times.
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.
Brighton Fun Run, Saturday 25th July 2015
Please see attached if you fancy joining in. One of our members Vicki Faires is running to raise funds for Max Appeal.
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.
BUPA Great North Run, Sunday 13th September 2015
All our places have been snapped up again!! Get in quick next year if this iconic run "floats your boat"!
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.