







“Thank you so much for sending us your materials from Max Appeal! You are doing a terrific job and I'm sure the families are gaining a tremendous amount of insight into the deletion, as well as, emotional support from your publications. I also applaud your interests in educating professionals about the deletion. This is really a "grassroots" effort which I'm sure will pay off in the long run. Could you please tell us how we can remain on your mailing list and also let us know if there is anything we can do to help you. We would be delighted to help in any way we can!” Donna M. McDonald-McGinn, M.S., C.G.C., The Children's Hospital of Philadelphia
Max Appeal informs ECHDO on 22q learning issues
European Congenital Heart Disease Organisation. 26th-27th May 2012 in Istanbul, Yurkey at the Ramada Plaza Hotel.
Much of ECHDO's work is focused on quality of life issues, and this will be the first opportunity that many of the countries represented will have have had to know about the learning issues assocaited with 22q deletion.
International Meeting in Florida
The 8th Biennial International 22q11.2 Deletion Syndrome Meeting - From 6th to 10th July 2012
'Detection * Care * Cure – The Magic of Making a Difference'
Located at Disney's Yacht and Beach Club Resorts in Lake Buena Vista, Florida, USA.
You don't get many opportunities like this! Have a fabulous trip to one of USA's top resorts AND get all the latest and best information about 22q deletion...? Do you really need to think about it???
Sci Fi for Max Appeal
Hello there fellow members of Max Appeal!!
Craig Adams here. (Doctor Who & SciFi Nut of Hinckley)
Just writting to say a big big thank you for Julie Wootton who came along on Saturday and supported us at The Greatest Show In The Galaxy SciFi Convention at Peterborough's East of England Showground.
Think HEART goes to the House of Commons
Max Appeal represented people with 22q at the programme for Screening and Early Detection forum on Monday 14th May at the The Diana Rooms in Westminster followed by a Parliamentary Reception in the Members Dining Room at the House of Commons.
The Think HEART Campaign is about recognising signs of heart defects in children as early as possible. CHF is also calling for pulse oximetry (oxygen stuartion monitoring) to be added to the Newborn Infant Physcial Examination (NIPE).
From DLA to PIP
DLA is currently being reformed and will be replaced with Personal Independence Payments. The Department for Work and Pensions is currently consulting on the specific detailed proposals for these new payments and Max Appeal would like to submit a response on behalf of people with 22q deletion.
This will affect everyone aged 16 – 65 receiving DLA.
