In December 1988, Andrew Orchard – whose son was diagnosed with CGD in 1985 – founded a small patient group. At the time, after discussions with their specialist, Andrew realised how little information and support was available for families affected by the condition. Determined to change that, he set out to create a space where people in similar situations could connect, share experiences, and support one another.

The late Ocean (Paul) Numan had the vision of setting up a charity with the aim of raising funds for research. In 1991 the CGD Research Trust was formed and registered with the first fundraising event (auction of promises) taking place in the summer of the same year, raising £7,500.

In 2011, CGD Research Trust changed its name to CGD Society.

Jeans for Genes

Jeans for Genes began in 1992 when volunteer Rosemarie Rymer invited schools to hold a non-uniform day, asking pupils and teachers to donate £1 for wearing jeans. The first campaign raised £50,000, led by Rosemarie and volunteers from the CGD Research Trust. 

In 1996, other organisations joined forces – including PiA, MPS, and Great Ormond Street Hospital – raising over £865,000 in the first joint appeal. 

Since then, the campaign has grown, but its mission remains the same: wear jeans to save lives. To date, it has raised over £45 million for projects supporting people with genetic disorders. 

Research

Since 1997, CGD Society (previously CGD Research Trust) has invested nearly £3.5 million in research into CGD. 

CGD Research Trust, along with the registry team at Newcastle General hospital, also published the first comprehensive CGD Registry of UK and Ireland. The registry provided important comprehensive information on the clinical course, complications and risks of CGD. The findings were published in a leading British immunology journal and the paper received an award in 2008 for the best research article in the field of primary immunodeficiency published in clinical and experimental immunology. 

CGD Society has funded a variety of research projects over the years which include; 

  • Our funding supported the first proof of principle experiments to clinical trials of gene therapy for CGD. This has led to commercial interest in bringing this therapy into mainstream medicine and will pave the way for the development of gene therapy for the other forms of CGD. 
  • The development of new methods to better diagnose the autosomal forms of CGD. 
  • Finding better treatments: Funding research into repurposing of a drug, already used clinically to treat another condition, that was found to help fight infection and reduce inflammation in a CGD animal model. This work led to the start of clinical trials in CGD patients. 
  • 84 scientific articles published in high standard research journals. 
  • The forging of international research collaborations between groups. 

 

Our nursing service

Our UK-based nursing service is fully funded by CGD Society through individual donations and fundraising events and income generated by Jeans for Genes Day. We do not receive any funding from the NHS to support this service. 

It became clear to the charity that families needed a personal source of medical help on an ongoing basis. In 2000, with monies raised from Jeans for Genes Day, we were able to fund our first CGD Clinical Nurse Specialist. Based at Great Ormond Street Hospital, London, our nurse became a first point of contact for families and individuals when faced with the many challenges CGD can bring.