Family Day at Temple Newsam house Leeds., Sunday 28 June 2015
Max Appeal Family Day At Templenewsam House Leeds. 28th June 10.30am This is being organised by Martin Kennedy who is a Trustee of Max Appeal. An informal meet up at Templenewsam House in Leeds. Templenewsam is a lovely place with lots of space for the kids to run round and a big outdoor adventure park area. I thought we could meet up from 10.30 onwards pitch our chairs round and have a good natter over a picnic lunch. The good thing is the place is free to park, there is loads of room, there is a cafe and shop etc. There is also a farm to go round but I understand this costs around £6.00 to get in. All welcome! Please email email@example.com if you have any queries.
A tremendous thank-you to all who have made this year's 22q@thezoo so successful. Organisers, venues, 22q11DS families and corporate sponsor Great Northern Rail. Great day at locations around the Uk and worldwide. Ask us about 22q11DS!
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. Not much is known about the educational and healthcare support needed for individuals with 22q deletion syndrome, or whether it is available. We are a group of researchers interested in finding out more about the educational and healthcare experiences of individuals who have been diagnosed with 22q deletion syndrome and are living in the United Kingdom. We are particularly interested in finding out individuals' and/or parents'/guardians' views on education and additional support for learning at school, and their experiences of medical services in both hospital and community settings. We have designed an anonymous electronic survey. If you are interested in finding out more please follow this link:
Great Northern contractors prepare Shepreth Wildlife Park for 22q at the Zoo
This Friday 8 May will see 'Ground Force'-style renovations at family-run wildlife park – Shepreth Wildlife Park. The 35 strong team will be preparing the park for 115 people coming to 22Q at the Zoo on Sunday 17th May 2015. The day has been kindly sponsored by Great Northern.
Big day approaching for Max Appeal runners
It's race day on Sunday 26th April for the 2015 Virgin Money London Marathon. Good luck to all our runners! We hope they all enjoy the occasion and get round the course safely. Their fundraising will make a big difference to Max Appeal, please support them. If you would like to run in the 2016 race then do get in touch and let us know.
Special Offer for TrekFest
To get this special offer don't delay and register for this popular event. Gobal Adventure Challenge have notified us of this special discount code for the last remaining places. Just use FB10 when booking your place. This will give you £10 off the registration fee. The Peak District TrekFest in September is another option and now is a good time to register your interest and reserve your place. Use the special link below; There are three distance options of 13, 29, 54.
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.
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.
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.
22Q at the Zoo Sunday 17th May 2015 Shepreth Update....
Shepreth update.. Don't miss out.... The following will all be on offer. We havefunding from the Department for transport to purchase train tickets. This will cover around 50 people's travel by train on the Govia Thameslink Railway - if you are in the London or Kings Lynn area etc then this will definitely benefit you. Also Everybody who books for Shepreth will receive a free '22Q at the Zoo t-shirt. (Donations to Max Appeal for them will be gratefully received but entirely optional) Shepreth Wildlife park will be hosting two special 'meet the animal' sessions. ( one morning and one afternoon ) Sarah Ryan and Leah Ryan will once again be hosting and hopefully Christopher Ryan will be well enough to join us as well. Booking form below...
Max Appeal Youth Camp, Saturday 23 May 2015
Max Appeal Youth Activity Weekend at Cranham Scout Centre. An opportunity for children affected by 22q11 DS to get together and have fun using the outdoors. Lots of activities and new things try out. Great for confidence building. Booking forms will be available online w/c 7/3/15. For further details please see the poster below. Any enquiries to firstname.lastname@example.org
Brighton Fun Run, Saturday 25 July 2015
Brighton Fun Run on the 25th July. Please see attached if you fancy joining in. One of our members Vicki Faires is running to raise funds for Max Appeal.
Col Me Rad 5km, Saturday 16 May 2015
A fun run with a difference...sign up for a fun time and raise funds for Max Appeal. A series of runs and dates around the country over May and June. Check out the website and find one near you and take part. We already have one supporter signed up! Good luck Lindsay!
The Zoo Bewdley - Donations for Computers, Friday 20 March 2015
The Owner of a Computer repair shop is helping out Max Appeal by offering refurbished PC equipment in return for customers willing to make a donation to Max Appeal. Steve Gould the 57 year old owner of The Zoo in Bewdley, was contacted by someone who knew that M D Events Group had donated computers to Max Appeal to enable the charity to raise vital funds. The Zoo is now reconditioning the computers and has put together 6 fully working systems and will offer them for free to whoever will give a sizeable donation to Max Appeal. The systems would normally go for £150 but would like to think that people will be willing to give at least £60-£70 to Max Appeal.
Nifty Fifty Endurance, Saturday 16 May 2015
Dave Conroy and team all Set to raise funds for Max Appeal, teams consisting of four riders are set to compete in a 5hr Endurance Race on mopeds and scooters of with engines of up to 90cc's They will try to complete as many laps as they can on a specially prepared off-road circuit on the outskirts of Winchester in Hampshire. Each team has selected a charity of their own choice and will be aiming to collect sponsorship and donations for each lap of the circuit that they complete during the 5hr race. They will have to navigate small jumps and climbs and try to overcome all adversities during the event and endeavour to keep their little machines going right to the end. The machines being used once started life as road machines and have been adapted for this event by way of minor modifications such as off-road pattern tyres and the removal of lights and mirrors. This ensures that each team can compete against each other fairly and that the cost of competing is kept to a minimum. Small prizes will be offered for the teams completing the most laps and a special trophy will be awarded to the team which kept going in the face of all adversities and kept their spirit to the end. Please feel free to show your support by cheering Dave on at Route 34 Motocross Park (was Tonymoto MX Park), Down Farm Lane, Winchester, Hants. SO22 6RG Dave has has also set up a just giving page...
Media Release Cardiff University Study 22q11 DS
Results from Cardiff University are released.
Press Release Post APPG Event, Friday 13 March 2015
Press Information for 22q11 Syndrome APPG Event. 'I set up this APPG to raise awareness about this syndrome now that it can be tested for. The detection rate is currently very low which means people may not be getting the help they need. I am pleased that so many of my colleagues have joined this APPG.' Jack Lopresti MP.
22q11 Syndrome All Party Parliamentary Grp Launch, Tuesday 10 March 2015
MP's,families and medics from across the UK will come together for an event at the House of Commons to raise awareness of those affected by 22q11 Syndrome.
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.