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.
Spread 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. Mark has just completed an interview with his local paper, again highlighting our new Consensus Document. Here is the link to access it; www.biggleswadetoday.co.uk/news/local-news/family-join-global-campaign-to-fight-rare-chromosome-disease-1-5100957
22q at the Zoo THIS Sunday
Around 300 people have booked up again this year!!!! Very sorry if you are one of the few who might have missed out on this event.. there is always next year. We may get some people who are booked but find they can't attend, if you'd like to a reserve, please call 0300 999 2211. T-shirts, big red badges with "Ask Me About 22q", and squdgy zebra toys will be despacthed to the group leaders this week.
Dragon Boat Racing in London
THIS SUNDAY. Rounding off Children's Heart Week with a splash!! Click on the link and come and join us we bask in the blazing sunshine in Surrey docks...okay, I might be optimistic there.. but there will be hot food and lots of entrtainment, not least watching people trawl a few hundred metres up the Thames and then back again.. Hawaii 50 has nothing on this lot! (yep, that's optimistic as well) This is set to become an annual event.. interested in buying a seat, getting a team for Max Appeal and raising some money? Would your child be good a beating out the stroke rate on the huge drum on the prow of the boat??? Call 0300 999 2211
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, yesterday. 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?
New 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;