What is the prevalence of 22q deletion in the population?
Prevalence of recurrent pathogenic microdeletions and microduplications in over 9500 pregnancies What is the prevalence of 22q deletion in the population? 1/992 and duplications 1/850 New article just published.
Stourport Max Appeal Members Picnic in the park, Sunday 12 July 2015
Max Appeal members and friends. Meetup at 11am. Picnic in the Park. Stourport on Seven. Further details to follow.
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 26 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 02 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 18 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.
Wollaston Tennis Club Family Fun Day, Saturday 11 July 2015
Wollaston Tennis Club Stourbridge, West Midlands Invites you to a family fun Saturday 11th July 2015 from 2pm Come and join us for a free afternoon of fun and tennis Featuring the Great Wollaston Bake off BBQ - Music - Bar - Ice cream Bouncy castle - Fastest Serve Competition 8 floodlit courts - function room Many great donated raffle prizes. All in aid of Max Appeal
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 19 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.
The Thameslink Tracker, Sunday 12 July 2015
For details of the Branch Line Society's special rail tour, go to the link below. Max Appeal is one of the nominated charities being supported.
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 23 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 25 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 25 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 13 September 2015
All our places have been snapped up again!! Get in quick next year if this iconic run "floats your boat"!
Imperial College London Research
Volunteers affected by 22q DS are wanted to take part in a research project by the Department of Psychosis Studies at the Institute of Psychiatry, King's College London. Please see the link below for further details: If you have any questions, please contact Dr Maria Rogdaki, firstname.lastname@example.org
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.