September 2012


We hope you enjoy this update and would welcome your feedback on our first online newsletter. Please let us know what other information you would like us to include in future newsletters by emailing


Looking after your lungs

Keeping your lungs healthy is so important when you have CGD. Find out why and get answers to your questions about lung health and tips on how to keep this vital organ in top shape.



Get your flu jabs

Hard to believe but it's nearly Autumn – which means it's flu jab time. Learn more about how and why it's important for someone with CGD to be inoculated.

Find out more...



Family weekend news

We're delighted to announce that Dr Paul Veys, Director of the Bone Marrow Transplant Unit at Great Ormond Street Hospital, will be speaking at the UK CGD Society Family Weekend in October.

He will answer your questions on bone marrow transplantation, do go get thinking!

We are looking forward to welcoming you to the family weekend in Surrey on the 26, 27 and 28 October. If you haven't let us know you would like to come, do please get in touch.

We have a packed programme to give you the latest information on CGD. There will also be lots of social activities to give you the chance to meet, talk and share experience with other affected families.

Find out more...



Sign up for Jeans for Genes Day

It's time to get your jeans on, have fun – and raise some money for the CGD Society at the same time.

Sign up for this year's Jeans for Genes Day, which takes place on 5 October, at

Remember that 15% of all money raised goes to the CGD Society.



Volunteers needed for CGD carrier research

Are you a carrier of X-linked CGD? We're working with the UK's three main centres of CGD expertise to recruit volunteers for a study into how being a carrier can affect your health. Find out more about how you can help.

Find out more...


Pounding the streets of London for the CGD Society

"I thoroughly enjoyed the challenge of the British 10k. I was so glad to be able to give something back to all the very special people connected with the CGD Society for the support and care that they provide to CGD sufferers."

Those are the words of David Kitt. He was one of our two runners who together took on the challenge of the British 10k race in London in July. David raised a fantastic £2,000 for the CGD Society!

Read David's story here...



A close shave

When Simon Stockwell grew a beard, his workmates hated it. "They said they'd pay me to get rid of it," says Simon. So he took them up on their offer and did a sponsored shave for the CGD Society. "I wanted to give something back for the support my son Sam and I have received over the years."

Read Simon's story here...



Feeling inspired?

Raise money for CGD by taking part in a sponsored fun run or by putting on your own fundraising event.

We have some great fundraising ideas for you….



Share your stories

We'd love to hear about what you’ve been doing to raise funds for the CGD Society. Please send your stories and photos to so we can share them on our website and Facebook page.



Share your tips

Are you a UK based family that has travel insurance covering a family member affected by CGD? If you would recommend the company you use, please do let us know so that we can share this recommendation with others.

Please email


We would like to thank our recent donors

Simon Stockwell and all his colleagues and friends

The Leyland Golf Club and all its members

Friends of Barry Whitehouse

Supporters at The Brown Jug pub

Mr and Mrs John Creamer

Supporters at the Holwell Bingo club

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

Make a donation...


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