Protect the rights of children and young people
The Children and Families Bill is currently progressing through Parliament. Many organisations representing disabled children and their families are very concerned about a number of the existing proposals, as not all of the existing rights of children and young people with Special Educational Needs are protected. To find out more about the proposed changes and how you can ensure the law and guidance on SEN meets the needs of disabled children please visit IPSEA's website.
Christmas Party, Sunday 08 December 2013
You are invited to Max Appeal's Family Christmas Party, Disco and Buffet. Come and have fun and enjoy the party games at Innsworth, Gloucester.
IPSEA Training Day for Parents, Friday 08 November 2013
Limited offer IPSEA is running some training days on SEN law. The aim is to help parents and professionals navigate the SEN system. Location and dates; Chalton, London 8 Nov. 10.00am- 2.30pm Bishop Stortford 22.Nov. 10.00am -2.30pm Kingswood, Bristol 4 Dec 10.00am - 2.30pm Also includes an optional session from 2-30 to 4pm on the proposed changes to SEN legislation. Max Appeal will support the cost of course fees. Contact; Claire@maxappeal.org.uk if you are interested in attending.
Sky Dive, Saturday 26 October 2013
Gemma Maybury is fundraising for Max Appeal by taking part in a tandem skydive.
New Information Card - your input is needed!
To maintain our accreditation under the much prized Information Standard, every new 'product' (that the word they use!) ie information that helps families and members of the general public, has to be approved by professionals and members of the intended target audience. This new product is actually a revision of a business card, giving Max Appeal contact details on the front and on the back there is a list of 'main features'. What do we need you to do? Have a look at the PDF of the Information Card, then either print and post the approval form (from within the UK to "Freepost Max Appeal" - no stamps needed) OR click on the on-line questionnaire below. Thank you!!
Good luck for the Great North Run
It's here at last...Sunday 15th September is the date for this year's Great North Run. We have lots of runners taking part and raising funds for Max Appeal. Good luck to everyone! It's still not too late to support them by offering your sponsorship. Please visit their fundraising pages or just donate directly to Max Appeal. If you have missed out this time, there is always next year or the Birmingham Half Marathon in October. Contact email@example.com for further details.
Echo Challenge, Saturday 28 September 2013
A 6km and 10km off road run around hilly woodlands trails, green pastures, epic scenery and fabulous venue.
Support us to set up an All Party Parliamentary Group for 22qDS
Following the launch of the first National Consensus Document for 22q DS at the House of Commons in April of this year, several Mp's have suggested we consider setting up an All Party Parliamentary Group for 22qDS.
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.
Rock n Roll Half Marathon, Sunday 22 June 2014
Sign up for the Rock n Roll Half Marathon in Edinburgh.
Check out the events on our website and join the fun this summer. If you are holding a get together over the holidays and you would like other Max Appeal members to join you please send us the details at firstname.lastname@example.org and we will advertise the event for you.
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.
Information Standard Success
Max Appeal was audited by the Royal Society for Public Health Certification and found to meet the Information Standard for scripted information produced by Max Appeal for parents, carers and all those affected by 22q11 deletion syndrome, including information on diagnosis, signs and symptoms, medical care and advice, to enable those affected by the syndrome to achieve their full potential.
Scottish get together, Sunday 01 September 2013
Join up for a visit to "The Yard", which is a purpose built indoor and outdoor adventure playground in Edinburgh for children and young people with additional support needs, and an afternoon of fun in the nearby park. Bring along the whole family and a picnic.
Max Appeal on the Beach, Saturday 31 August 2013
Enjoy a fun day on Scarborough Beach.
We were so pleased to here from Leah who is celebrating her final year at Roundswood Park School. Leah proudly received an award for achievement from Mr Henshall her Headteacher.
Ride Across Britain success
Jason Allan is a Max Appeal hard man! Here are some of the facts of the week that he let us know about: * 987 miles covered. * 72 hours and 40 minutes on the bike. * 59,000 feet climbed. * 400,000 pedal turns. * 60,000 calories burned.
Max Goes to School - Book Launch, Wednesday 28 August 2013
Max Lechner's life tragically ended when he was 11years old in December 2011. But Max is not the sort of boy who is easily forgotten and his Aunty Nicky has written a fabulous and uplifting story in tribute to this engaging, happy and bubbly boy. Come to the book launch at Kippie Lodge near Aberdeen, one of Max's favourite places, and enjoy hot dogs and refreshments!
Calling all runners
Max Appeal has a number of places in the Great North Run and Birmingham Half Marathon. We need to fill all of the places to help raise much needed funds for Max Appeal so please put any family, friends, neighbours or work mates in touch with us. Further details are on the website and you can email Paul Wootton, on; email@example.com. Paul will guide you through registration. If there is an organised event near you and you would like to take part and raise funds for Max Appeal we would love to hear from you. We can supply you with a Max Appeal running shirt and support with fundraising.
Two fundraisers from Derby are embarking on a 2,500 mile journey in a banger to raise money for charity. David Reeves (24) and Mark Sandercock (39), from Sinfin, will be taking part in a once in a lifetime event which will see them drive along some of the locations used in the original The Italian Job film.
Birmingham Half Marathon, Sunday 20 October 2013
Max Appeal has secured 25 guaranteed charity places in the Great Birmingham Run on 20th October respectively.
Great North Run, Sunday 15 September 2013
Max Appeal has secured 25 guaranteed charity places in the Great North Run. Entry fee is £49.00. You can secure a place by completing the entry form attached and returning either via e-mail or posting to'Freepost Max Appeal'. Entry fees can be paid via cheque made payable to 'Max Appeal' or direct to our bank at CAF Bank, sort code 40-52-40, account number 00016137.
Fun Run- Peak District Challenge, Saturday 06 July 2013
Another challenge... but in a beautiful setting! Enjoying the view will make you feel less out of breat... no really!
Youth Activity Weekend, Friday 07 June 2013
We're all set for a wonderful time at Cranham Scout Centre in Gloucester this weekend... the weather is all set to be blazing hot and generally glorious. That means that everyone will enjoy the BBQ on Saturday night. Simon has got a fabulous line up of activities... watch this space for how it all goes!
BBC Radio 4 Woman's Hour
Max Appeal members Caroline and Lucina took part in the BBC Radio 4 Woman's Hour programme. Caroline spoke about the difficulties in getting a diagnosis of 22q DS. Many parents share the same concerns. We hope the Consensus Document will help to raise awareness of the condition, 22q DS.
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.
Spreading the word about our new Consensus Document.
Mark Tripp has been working hard to ensure lots of people have heard about 22q DS. Mark came along to the House of Commons launch in April and he is in touch with his MP, Alistair Burt who has also become familiar with the problems many parents encounter when accessing support for their child.
22q at the Zoo 2013
Around 300 people enjoyed a great awareness day at their nearest venue, and there were 7 of those around the UK for Max Appeal. It was really great to see loads of red t-shirts, red badges saying "Ask me about 22q" and the zebra toys at our zoo... and we're really looking forward to making next years even bigger. Pictures will be in the next newsletter.
Launch of UK National Consensus for 22qDS at House of Commons
Max Appeal launch of the UK National Consensus for 22q deletion at House of Commons 15th April 2013.. what a great event. Loads of THANK YOUs; first off: Margot James MP for Stourbridge for sponsoring the Max Appeal event, she is a great supporter of Max Appeal!
This was a deffo "must have" for us... though it seems a bit daft putting it up on the web site really, when the object of a qr code is that people 'scan' them (and you'll need an app for that!) with their smartphone which then directs their phone browser automatically to that web site. So clever isn't it? Doesn't it look lovely?
Special Max Appeal Phone Number 0300 999 2211
Ofcom recently made a new set of pre-fix telephone numbers available for public bodies and not-for-profit organisations ie charities, so you know when you see the number begining with 0300 it is genuine. We have been able to obtain 0300 (charity Pre-fix) 999 (help) 2211 (twenty two one one) for Max Appeal. The other benefit to you is that it charged at standard call rates, so are covered if you have a call package with your mobile phone compnay, whereas 0800 numbers are premium for mobiles. We think this is pretty cool!
Qiz Night in Clent Worcs.
Great Quiz Night at Clent Village Hall, nr Stourbridge in Worcestershire. The Farmer family organised this event for Max Appeal as their son, Tom aged 3 years, has recently been diagnosed with 22q deletion. This amazing family have raised a whopping amount of cash for Max Appeal... and we had a really good evening too, might have come second if we'd listened to the youngest Max Appeal team member! Thank you!!
Running Challenges for 2013
Are you looking for a running challenge this year? Max Appeal has a number of places in the Great North Run, 15th September and the Great Birmingham Half Marathon, 20th October, 2013. Contact Paul@maxappeal.org.uk for further details. Check out the link below for a variety of running events around the country;