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.
Snakes and Slides 22q Meetup 22nd Feb, Sunday 22 February 2015
Ultra Challenge, Saturday 02 May 2015
Support Lee and his brother Mark with their Challenge events for Ivy. Does anyone have any contacts for discounted hotel accommodation at any of the challenge locations? Lee would be pleased to hear from you if you can help. If you can help please contact Lee by emailing; Leemitchell1975@yahoo.com
Behavioir in the Classroom journal article
Thanks to Colin Riley for this.. have a read, it's not all about 22q, but lots of relevant information
Asda Cheltenham Bag Pack, Sunday 22 February 2015
We have been offered a bag packing opportunity at the Asda store in Cheltenham on 22nd February between 10am and 2pm.
Our Great Big THANK YOU page....
We have some wonderful members and supporters so we would like to say a GREAT BIG THANK YOU..... The link below will take you to our Thank you page.
Virgin London Marathon, Sunday 26 April 2015
Support those running for Max Appeal in the 2015 race.
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.
New Year, New Challenge
My name is Lee Mitchell and I am the proud father of 3 amazing children. Ivy, my 2-year-old has 22Q Deletion. My brother, Mark and I want to raise money and awareness for children and adults who have 22Q deletion by supporting Max Appeal. So we are doing what we can, the only way we know how through ultra endurance challenges! Read more about Lee's plans and motivation..
Wishing all our members, supporters and professional colleagues a Merry Christmas and a Happy New Year. We look forward to working with you to raise awareness of 22q Deletion Syndrome in the coming year.
Are you planning an awesome 2015?
If you are already planning ahead and thinking of how you are going to make a difference in 2015 or even stuck for a Christmas gift for someone special... have you considered Gobal Adventure Challenge events...you can challenge yourself or someone else and raise funds for Max Appeal all in one go! Global Adventure Challenge have gift vouchers available! From £25 upwards, the vouchers can be redeemed against the registration fee of any of their challenges*. To purchase a Gift Voucher email them with your contact details: email@example.com *excludes TrekFest registration fees. Click on the link below to view their popular challenge events. For further options contact firstname.lastname@example.org We would love to see you supporting Max Appeal with these superb events.
22q11DS APPG in the papers
Read all about it! Paul Wootton, Jack Lopresti MP, Margot James MP and Julie Wootton.
22q11DS All-party Parliamentary Group
We now officially have a 22q11DS APPG! This may cause the admin people at House of Commons a bit of trouble seeing as the list for APPGs is A-Z so ours is the only one that's a number... hopefully should put us at the top of the list. In the full picture from left to right: Paul Wootton, Dr Clodagh Murphy, Gillian Cassidy, Julie Wootton, Jack Lopresti MP, Carla Attwood, Claire Hennessey, Keith Markham, Marcus Jones MP and Dr Alex Habel.
22q APPG Launch
Please contact your local newspapers about this. Download the press release or get in touch. email@example.com
Drayton Manor Park - 8th December
Bewdley Rotary Club and Kids Out have kindly donated 12 tickets for next Monday! Get in quick!!
Santa ExpressTrain, Saturday 13 December 2014
Govia Thameslink Railway have generously offered Max Appeal an initial allocation of 20 places on board their Santa Express train. The service forms a round trip from Bedford to Sutton and back again.
Family and Childcare Trust - need family stories
Calling for heart families whose child has special educational needs who maybe interested in sharing their experiences for a video of 'top tips'. Click to read more!
tRailbazer Walk, Friday 13 March 2015
Sponsored walk with tRailbazers along part of the Atlantic Coast Express Railway line between Eggesford - Umberleigh, North Devon.
Scottish Disability Golf
With the assistance of a local Sports Trust, and in conjunction with "TS Sport", a First Swing Clinic Golf Day has been arranged at Wellsgreen Golf Academy, near Kirkcaldy on Sunday 16 November from 11:00 through to 15:00. SDGP members are invited to come along for golf lessons, practice time and a social gathering. Places are very limited and will be allocated strictly on a first-come, first-served basis. Members should get in touch as soon as possible, via the Contact us page of our website. World Cup Information on the World Pairs Championship, at the Westerwood Resort in Cumbernauld, from Thursday 23 to Sunday 26 July 2015 is now on the SDGP website Fixture Page. A package will be provided for any disabled golfer, which will include four rounds of golf and four night's dinner, bed and breakfast + a cart. Scottish Championships The SDGP can also announce that the 2015 Scottish Championships will take place over 36-holes in Edinburgh on Thursday 9 & Friday 10 April at the Swanston and Silverknowes Golf Clubs. This event will also incorporate the Jim MacLeod Trophy.
22q11DS Moves On Westminster!
Max Appeal has been working hard with Jack Lopresti MP to form an All-party Parliamentary Group for 22q11DS to raise awareness of the condition at the highest level, that is the government. First meeting to plan the official Launch in March is Tuesday 2nd December with two more meetings.
Somerset House Skating, Saturday 06 December 2014
Max Appeal Family Meet up - Saturday 6th December. Meet around 2-3pm Somerset House. Tracey Hennighan is kindly arranging this event. Ice skating - 3-5pm Please contact me if you would like tickets and we can check availability. Prices start from £7.50 firstname.lastname@example.org Or book direct... http://www.somersethouse.org.uk/ice-rink/times-and-tickets Or just go and meet up and watch some of our members fall over !!! Then go for a bite to eat and a drink around Covent Garden.
MD Events - Thank you!
Huge thanks got to Tarquin Scadding-Hunt and colleagues at MD Events in Bracknell for the donation of computers, laptops and all the paraphernalia that goes with them. This will be a great help, we will make the machines available for children to use at home and for families who struggle to keep in touch with the 22q and Max Appeal community
BUPA Great North Run, Sunday 13 September 2015
Are you planning a challenge for 2015? Contact email@example.com for running place information.
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.
Mead Open Farm 22q family meetup Christmas Special, Sunday 14 December 2014
12pm onwards Stanbridge Road Billington Bedfordshire LU7 9JH
Information Standard Success
It can't be said that it is easy to achieve and retain this quality mark for producing information that is appropriate, clear, accessible, accurate, balanced, evidence-based, referenced, user-tested and regularly reviewed. Thank you to "Tessa The Assessor" from Royal Society of Public Health for help and perseverance. We hope you think it's worth and that the NHS does too! If you want to know more, please get in touch.
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
Max Appeal Express
A First Capital Connect train specially branded 'Max Appeal' was launched at a ceremony at King's Cross Station. Mark Tripp, father of Adam, 8 years - the inspiration behind the campaign, drove the train and guests to Cambridge.
Have you spotted one of our posters?
Julie Wootton's selfie with Adam's poster. Send a picture of your gang with Adam's poster and let us know the location. Send to; email@example.com
South West Cleft Service is on the move
The South West Cleft service will be moving to Bristol Dental Hospital, University Hospitals Bristol NHS Foundation Trust, during the third week of August. Please contact Dr Julia Cadogan or Lesley Sanders on 0117 340 3998 if there are queries or concerns about this change. Thank you very much on behalf of the 22q11 DS Service, Frenchay Hospital, North Bristol Trust.
You can now text donate a fiver to Max Appeal! Text 'Adam' to 70660 Adam is our poster boy on the First Capital Connect train the "Max Appeal Express" to be launched on 25th July...(thanks to Mark Tripp and FCC) and will appear on posters both on the train and platforms that the train visits. Text 'Max' to 70660 Max is the general donation text and will appear on Max Appeal literature.
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.