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Tuesday’s story (July 2020) The day we first met by poet Tuesday Gayle This post is brave, creative and brilliant – just like the author herself. We’re delighted to be able to share Tuesday’s insight into her own journey, living with Tp47 Autosomal Recessive CGD. If you’ve been encouraged to share your story, please contact us…

Meet the Gruessers “About two weeks before lockdown, we met Keith’s consultant at GOSH for his routine check-up.  We did discuss about our concerns regarding COVID-19 and our impending holiday to Australia and we felt assured that all was good to carry on with our lives as usual. The turn of events happened so quickly.…

Aydin’s story (April 2020) If you were to step into his classroom, you wouldn’t be able to tell five year-old Aydin apart from his friends – his cheeky smile, handsome brown eyes and smart haircut for school –  he is the picture of health and energy, though his parents tell a very different story… Carly met…

Alex’s Story (June 2020) Alex Creamer (32) originally from Preston in North West England was diagnosed with CGD at the age of 4 after his parents grew concerned about swelling and pain in his stomach.   Whilst this rare and life-limiting condition blighted many aspects of his childhood and adolescence, Alex talks in a largely…

  Sharing experiences of CGD brings those affected by CGD together, helping us better understand the reality of living with CGD, sharing the highs and lows, and acting as an important reminder that we are not alone in our CGD journey. Would you like to get involved and share your experience with CGD? If you do,…

FAQs – Lung Issues Here we try to answer some of the common questions people have about their lungs and how to take care of them. How many breaths a day do we take? On average, about 17,280 How much air do we breathe? People with healthy lungs breathe in around 11,000 litres of air…

Leave a Gift in Your Will A legacy gift to the CGD Society in your will could make all the difference. When people decide to leave a gift in their will (sometimes called a legacy) to a charity they’ve supported throughout their lifetime, they can continue to help a cause that’s close to their hearts.…

Gene Therapy Grants The main objective of the CGD Society and its predecessor, the CGD Research Trust, has been to help develop a cure for CGD using gene therapy. We have invested over £2.13 million in pursuit of this goal. Funding, which started in 1998 with proof of concept studies, has resulted in 40 publications.…

FAQs – Key Questions when Considering BMT Establishing at which centre you or your child will have a bone marrow transplant (BMT; also known as ‘hematopoietic stem cell transplant’ or HSCT) is a major decision. To help you research which centres have the necessary experience in BMT for CGD, we have put together a list…

Jeans for Genes What is Jeans for Genes? The Jeans for Genes campaign has a mission to change the lives of everyone across the UK living with a genetic condition. It raises awareness of the daily challenges faced by those living with a genetic condition and raises money to fund projects like ours that make…