Mead Open Farm 22q family meetup Christmas Special, Sunday 14 December 2014
12pm onwards Stanbridge Road Billington Bedfordshire LU7 9JH
Advance Notice of 22q11 Awareness Week!
We are pulling together a whole week of suggestions for activities, twitter feeds and fundraising to raise awareness of 22q11DS and Max Appeal. Watch this space... Put 22q11 awareness week in your diary starting on 22nd of the 11th... geddit?
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.
Afternoon Cream Tea, Saturday 25 October 2014
Afternoon Cream Tea in aid of Max Appeal at 3.30pm Methodist Church Main St Woodhouse Eaves.
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
BUPA Great Birmingham Run, Sunday 19 October 2014
Another opportunity to support Max Appeal and run through this historic city. Still time to sign up!
Leicester Half Marathon, Sunday 26 October 2014
Good luck to Jon Foster who is raising funds for 22q DS and Max Appeal by running in the Leicester Half Marathon. It's not too late to sign up for the race ; http://www.leicestermarathon.org.uk/signup/
More headlines for Max Appeal Express
The Max Appeal Express continues to make more headlines up and down the country. The Sunderland Echo writes about 22q Deletion Syndrome.
Train Competition - Once in a lifetime opportunity
Open to young people with 22Q11DS, aged 13-22 years. A once in a lifetime opportunity to spend time at a train driving academy and gain practical experience on driving a train. The winner will be invited to take a train ride from Hornsey to Kings Cross where they will be in a cabin and see the train driving first hand. TO ENTER: It's simple, take a photograph or a drawing of the Max Appeal train and say in a few words why you would like to work on the railway. Then send to us at: MAX APPEAL TRAIN COMPETITION, 15 MERIDEN AVENUE, STOURBRIDGE, WEST MIDLANDS, DY8 4QN. REMEMBER TO INCLUDE: YOUR NAME, ADDRESS AND CONTACT NUMBER. Deadline for entries is 30th September 2014 Proudly supported by First Capital Connect.
Max Appeal Express
A First Capital Connect train specially branded 'Max Appeal' was launched at a ceremony at King's Cross Station. First Capital Connect are sponsoring an awareness campaign for 22q DS. Mark Tripp, father of Adam, 8 years - the inspiration behind the campaign, drove the train and guests to Cambridge.
Yorkshire Marathon, Sunday 12 October 2014
Barry West is running in the Yorkshire Marathon and raising funds for Max Appeal.
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.