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; firstname.lastname@example.org
Max Appeal and First Capital Connect Train Naming, Friday 25 July 2014
Join us on the 25th July.
Consensus Document in Spanish!
Sixto García-Miñaúr has worked very hard to bring this translation of the consensus document to you all! Down load it from here of visit the Spanish group web site.
Picnic in the Park, Sunday 29 June 2014
Get together with Max Appeal members at Duthie Park, Aberdeen.
Mary's Exam Revision Tips
Struggling to nail down that revision?? Mary has put her top tips together, and having 22q herself she understands how tricky and daunting revision can be.
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.
Summer Beach Bash, Sunday 27 July 2014
Fun Beach Day on North Beach, Scarborough.
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.
Three Peaks Challenge
Good Afternoon Everyone, Some of our brave colleagues at Mercure Hotels will be taking on this year's 3 peaks challenge! For those who haven't heard, the 3 peaks challenge involves climbing the 3 highest peaks in the United Kingdom within 24 hours. Focus Hotels have brought a team together to complete this challenge all in the name of charity.
22q Immunology Cartoons
These cartoons were created by Hilary Joyce, retired immunology scientist and long serving (or is that suffering??) Max Appeal trustee a few years ago. The cartoons help give an understanding into the highly complex subject of immunology and immunology for people with 22qDS. Please do have a good look at these and complete the usual forms/on-line survey.
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. Join the Max Appeal fundraisers and take part to help support families affected by DiGeorge Syndrome, VCFS and 22q11.2 deletion.
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.