December 2012


Only a few weeks to go now before Christmas! We thought we would give you a reason to take yourself away from the present buying and food planning to read our latest news. If you'd like to make any suggestions for future newsletters, please do get in touch.

  Don't forget your flu jab!
Have you had your flu jab yet? Please do not delay having it, especially if you are living in the UK. Figures show that 50% fewer people than this time last year have had the vaccine which means there could be a lot more flu around this winter. If you are in the UK and live with someone who has a weakened immune system, you are also entitled to a free flu jab. Or you can choose to pay for the vaccine at shops, including Boots and Sainsbury's. Costs vary but are around £10 to £12 per vaccine.

  Bone marrow transplantation
Deciding whether to go ahead with a bone marrow transplant is a major decision for any individual or family. It can be difficult to find the right information and to understand that information once you've found it. This is why we are creating a new section on our website dedicated to bone marrow transplants for patients with CGD. Over the next six months, we will be adding resources that give you basic information on bone marrow transplants, expert opinions and patient perspectives on the procedure.

Visit this section of the website to listen to a presentation made by Dr. Robert Chiesa of Great Ormond Street Hospital for Children in England on bone marrow transplantation today. You can also watch short films by specialists and parents whose children have recently had a transplant.

  Revised guide on CGD for medical professionals
When you're talking to medical professionals, it can be difficult to communicate the symptoms of CGD or what treatment you think might be required. We hope that, wherever you are in the world, our revised guide on CGD for medical professionals will help you to better discuss these things and improve the treatment you or your family member receives. 'A short guide to chronic granulomatous disorder, written by medical professionals for medical professionals' has been revised and is now available to download or order from our website.
  2012 UK Family Weekend
Families attending this year's event had a very enjoyable and informative weekend. We recorded all of the expert presentations from the weekend and have made them available to watch and download from our website. This year's guests spoke about bone marrow transplantation, keeping lungs healthy, improving communication with doctors, inheritance and future pregnancies, and a research project into X-linked carrier health issues.

  2013 Ladies' Day for carriers of X-linked CGD
Female carriers of X-linked CGD will be able to listen to experts and share experiences at a one-day event in London on Saturday 20th April 2013. If you are interested in attending the day, please email to confirm the number of people in your party. Do give us your suggestions on particular topics you think should be covered, even if you are unable to attend, as all presentations will be recorded and available to watch on our website after the event.
  Study shows improved quality of life following bone marrow transplantation
A recent report from bone marrow transplantation specialists in London and Newcastle has shown that children with CGD experience a quality of life similar to that of healthy young people once they have had a successful bone marrow transplant.
Find out more...
  Regional support groups in the UK
At the family weekend, a number of individuals suggested that they would like to set up regional support groups in the UK to provide more local support to families affected by CGD. If you would be interested in establishing a support group in your area or would like to join a group that has been set up, please take a look at the regional group page regional group page for further information.

  National support groups around the world
There are a number of support groups around the world for individuals and families affected by CGD. Please contact us if your country does not yet have an established group and you would like to use our website to help bring together people from your country.

  Family to family support
On Saturday 16th February 2013, we will be organising a one day training session in London for those individuals who would be willing to support another family affected by CGD. In particular, we are looking for people who would be willing to support a family with a new diagnosis, and those families who have been through a bone marrow transplant and would be happy to support another family through this process. If you are interested in attending this training session, please contact us.

  Raising money for us
Like many other charities in the current economic climate, the CGD Society is experiencing a significant decrease in income. If you would be willing to help support our work with families affected by CGD, please help us by signing up to a monthly donation. Regular monthly income helps us plan future activities and cashflow more effectively.

  Support with sport and raise vital funds for CGD in 2013
Would you like to support the CGD Society and take part in one of our sporting challenges? We have a huge range of new events on offer in our 2013 sporting events calendar. Whether you choose to run, walk or cycle, there are one-day events and endurance challenges for all levels of fitness and commitment. For a full list of all the events on offer click here or visit our website.

We will be there to support you all the way. So why not take up a challenge of a lifetime and raise money to support those affected by CGD.

  Appointment of new trustees
The charity's board of trustees would like to hear from anyone based in the UK who would be interested in joining them and help steer the work of the CGD Society over the next few years. The Board is particularly interested in hearing from adults affected by CGD and from parents of affected children. If you would like to know more about what the role involves please contact us
  Celebration evening for bone marrow transplant success
Angela Stockwell and her son Sam have been supported by the CGD Society for over 11 years and have raised £3,000 for the charity.

Sam had a successful bone marrow transplant in December 2011, and Angela and her friend Denise Tyler, organised a Chelmsford charity auction of donated prizes in aid of the CGD Society. Find out more...

  Recognition for CGD Society family
David and Louise Hannard and their 10 year old son Alex have won an award for raising awareness of the need for more stem cell donors to join the Anthony Nolan register. The family, who are CGD Society members, were recognised at the House of Commons award ceremony in September which honoured the work that the uniformed services have done to increase stem cell donor numbers.

David is a Flight Lieutenant and Louise is a retired RAF officer.

Find out more...
  We would like to thank our recent donors:
Angela Stockwell, Denise Tyler and all at Russell's Restaurant in Great Baddow
Supporters at The Brown Jug pub
Friends of Mr and Mrs John Creamer
Friends of Mr and Mrs Werner Schmidt-Tebelmann
The Medway Towns, Gillingham and Districts Women's Auxiliary League of the Licensed Trade

And to all who have contributed individually to our charity this year a BIG THANK YOU!

Make a donation...

We hope you found this last newsletter of 2012 informative. We wish you a happy Christmas and we look forward to being in contact again in the New Year!

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Write to us at: CGD Society, 199A Victoria Street, London SW1E 5NE