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Build a Lego Model, Win an Awesome Prize! Issue 13 The QEHB Charity Newsletter qehbcharity @qehbcharity Build a Lego model, win an awesome prize! Support our fight against cancer with four targeted appeals Join QEHB Charity in the half marathon, or run for fun at Cannon Hill Park! Read about our patients' remarkable struggles with rare diseases EHB for Q draising ! olved in fun mps ow to get inv ity Cha nd out h ur Char Fi and meet o Mike's What we letter do at QEHB Charity Take part in our What does summer mean to you? creative charity campaign For me it’s cricket at Edgbaston, lazy strolls in my local park, eating ice We are launching an Think you can do better? interactive campaign that cream and of course remembering Together with your help we are making a huge If you fancy yourself a crafty the slip, slop, slap rule. difference to our remarkable patients and their families, gives you the chance to win a Lego set, whilst showing off creative or a lover of Lego, it I’ll be slipping on a t-shirt, slopping as well as the wonderful staff who care for them, by your handy work! couldn’t be easier to get involved! on the suncream and slapping on a providing facilities that go above and beyond that hat as part of our QE Fighting Skin Inspired by several innovative Simply tag us in your inventions Cancer campaign – find out more on which is provided by the NHS. We do this by funding… inventions spotted online, we’re on Facebook, or Twitter by pages 18 and 19. giving you the challenge to build searching @qehbcharity, or email your photos to If you’re looking for a creative way an object entirely from Lego Cutting edge equipment, Research projects, [email protected] to spend the summer why not enter that is based upon a hospital like the cancer-busting including finding our new lego competition? As you theme. radiology machine, new uses for old and We can’t wait to see what you may or may not know, I’m a huge come up with! fan of the coloured plastic bricks and CyberKnife, which is helping inexpensive drugs to Get your creative juices flowing can’t wait to see your wacky models patients access new treat cancer. and check out our favourite finds – please see opposite for details and treatments earlier. on this page! inspiration! It was wonderful to receive so many applications from staff and members of the public for a ‘Sprinkle Some Magic’ grant. However, I did feel Facilities like Fisher House, Added extras, like a a bit like a judge on Britain’s Got Talent as it was so difficult to choose! a ‘home away from home’ teacher, Wifi, X-boxes Pages 8 and 9 reveal some areas in for military patients and their and DVDs for young the hospital where your generous families. people with cancer. donations have been spent. Finally, I love reading our Charity Psssst… Champs spreads as I’m always humbled by the amazing things our Follow us on Twitter Get involved and help us brilliant supporters do. Please let us Did you know and like us on Facebook spread the word for better know what you’ve been up to by we are now on for photos and regular care at @QEHBCharity. emailing [email protected]. updates, as well as our social media? Thank you! Many thanks again for your hard favourite weekly hashtag work and support! #thoughtdaythursday! Never miss a thing! Mike Hammond facebook.com/qehbcharity Chief Executive, QEHB Charity twitter.com/@qehbcharity 2 LOVE QEHB – QEHB CHARITY NEWSLETTER | ISSUE 13 LOVE QEHB – QEHB CHARITY NEWSLETTER | ISSUE 13 3 Artist’s impression of the inside of the new Rare Disease Centre. minutes 5with… Jordanne Whiley, British number one, world number five and Paralympic doubles bronze medallist in wheelchair tennis Rare diseases are more Tell us a bit about your links with Favourite book? the Queen Elizabeth Hospital "How to kill your husband and other Birmingham handy household tips" by Kathy Lette. common than you think When I was about three months old She's a very funny author and this was the I broke my leg when being winded only book that made me laugh out loud. gently by my Dad. I was diagnosed Did you know that The Queen Elizabeth Hospital It will have large treatment rooms He said: “The impact of living with a with Osteogenesis Imperfecta (brittle Last film you watched? 1 in 17 people in the UK Birmingham Charity has launched a and adolescent-friendly waiting and rare disease affects me and my partner, bone disease) and over the next The Other Woman with Cameron Diaz campaign, in partnership with the treatment rooms, which have been who is also my carer, as well as my family. 12 years broke my legs 26 times. who I love. She’s such an amazing will be affected by a Birmingham Mail and Sunday Mercury, designed after consultation with Throughout my life I have had to attend Fortunately, the ascent of my tennis actor and her personality is similar to rare disease at some to raise £1m to develop a Rare Disease representatives from a number of user thousands of appointments, sometimes career coincided with the release of a mine so of course she's hilarious! Centre bringing patients and experts groups. as many as three or four a week.” drug called Pamidronate which helped point in their life? together ‘under one roof.’ Favourite TV programme? There will also be areas for patients to Aadam Asif is eight years old and strengthen my bones and stopped 75% of those affected Game of Thrones. I'm addicted! I The Centre will be based within a new interact with each other, as well as for one of only 17 people in the UK to the painful breakages. I am proud watched three full series in five days! are children. Institute of Translational Medicine clinicians and researchers seeking to suffer from Niemann-Pick, Type B, which to be backing the £1 million Rare Disease Centre Appeal. which will be dedicated to developing understand more about rare diseases in causes an enlarged liver and spleen. Dream holiday destination? and implementing groundbreaking order to improve treatments. Patients What have you been up to so far The Maldives. I promised my boyfriend treatments, technologies and techniques will be given the opportunity to share The rare, life-limiting condition can led to this year? that when I won a singles grand slam to benefit patient care. experiences and be exposed to a feeding difficulties, jaundice, liver failure, I won the Australian open doubles and title I would take him there. research active environment. loss of motor skills and slurred speech. There are over 6,000 rare diseases reached the semi finals of the singles What would it surprise people to classified in the UK. Of these, 80% These requirements were recently His father Mohammed, a part-time driver, and then won both doubles titles in know about you? have a genetic basis. identified as being important aspects said: “When you are told that devastating two tournaments in America in March. of a Centre of Excellence in a survey news it doesn’t hit you straight away. It I also defended my singles title in Atlanta I used to sing in a band and in return Dr Graham Lipkin said: "The new Rare conducted by Rare Disease UK. is such a shock. There is no treatment in early May. I am now ranked fifth in they sponsored me. I've sung all my Disease Centre will provide highly- and no cure – you just have to manage the world. life but I'm really shy with it so Pictured above is teenager organised, one-stop clinics where Some of the numerous benefits to the condition and look after him.” not many people know that... not Seanie Nammock who suffers from FOP patients (with their carers) can undergo patients are reduced travel, dedicated What’s your proudest achievement? even some of my family! pre-planned diagnostic tests and see patient care co-ordinators, a To further raise the profile of the appeal, Apart from winning my Paralympic the Pride of Birmingham Awards will Why is it important to have a Rare Pictured below is encephalitis all specialists and the multi-disciplinary clinical environment focused on the bronze medal it has to be winning be held in September at the Town Hall Disease Centre? sufferer Rosie Paley (left) with her team relevant to their care – in one specific needs of the patient and the my first grand slam in Oz. That was Mum Helen and brother Ollie visit." identification ofnew areas of research. in Birmingham. amazing! It would be great to be able to go to a centre and know that you are getting Gaby Roslin and Barbara Nice will be What’s next on the agenda? the most up-to-date knowledge hosting and celebrity award presenters on your disease and that there are include Laura Mvula, Ali Campbell and I’m going to play in the French Open people there who understand your Tony Iommi. at Roland Garros in Paris in June. I am very excited to play there. I'm hoping condition. It would also be helpful For tickets to this prestigious event or to win my second grand slam! to meet other people with rare to find out more please contact QEHB diseases and realise that you are Charity on 0121 371 4852. To nominate Where do you see yourself in 10 not alone.
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