Rare Disease Day, Friday 28 February 2014
Rare Disease Day 2014 was marked by a series of events around the Uk.
22q At The Zoo
Come and have a great day out and raise awareness of 22qDS. TEN venues are being supported by Max Appeal: Bristol, Belfast, Chester, Dudley, Edinburgh, Flamingoland, Marwell, Newquay, Paignton and Paradise Wildlife Park. Subsidised admission: all 22q people, plus one, plus children 11 years and under are FREE. everyone else (Max Appeal members and family) is a tenner!
Skydive, Saturday 22 February 2014
Alan Taylor and Karl Matthews completed their first skydive in support of Max Appeal at the weekend.
Virgin Money London Marathon, Sunday 13 April 2014
Good Luck to all our runners who are taking part in this year's event. Our heros are; Joe Farmer...Joe ran last year as well!, Matt Allen, Andrew McGettigan, Austin Barnes, Blake Young, Steve Barlow and Rachel Wood.. ( father and daughter), Michael Sherwood and Pauline Pyke. Find out more about how things are 'shaping up' for their challenge on the big day.
Max Appeal Youth Activity Weekend, Friday 30 May 2014
Join us for a fun weekend.
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.
Parent/Carer 22qDS Consensus Document
Still forging ahead on our mission to bring you the best 22qDS information... but we can't do it without a little help from our friends. (I could write a song about that!) Please read the document and let us know your thoughts by completing the survey monkey on-line or printing and posting the form... the address to use within the UK is "Freepost Max Appeal" (no stamps needed). THANK YOU!!!
Day Out At Mead Open Farm
Click on the link below or just up above in 'Future Events' to find out more about this get together in Billington, Bedfordshire with Chris and Sarah Ryan
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.
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 email@example.com 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.
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. School is challenging for many young people affected by 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.