What do I recall from the early days of the CGD Research Trust, now the CGD Society?

 

 

I remember:

• Hearing the words ‘Chronic Granulomatous Disorder’ (CGD) thirty years ago and like most people, saying ‘What’s that?’

 

• Attending a friend’s fund-raising fork supper. Here, Steve Mills told everyone about Paul Numan and a brand-new charity that was going to raise money for research to help his two sons who were affected by CGD. Steve’s enthusiasm was infectious; he, Mary and their family were the reason I became involved with the charity.

 

• The satisfaction of getting together with Steve, Mary and a group of friends to organise an auction of promises; the barn being packed out with people from all around our local area; the generous lots that were given; the excitement building as bids were encouraged by our professional volunteer auctioneer Andrew Robinson; meeting Ocean (Paul, the CGDRT chairman) Numan and Peter Brown who both came down from Herts; Andrew, Doretta and Daniel Orchard and John and Ruth Capell with their son Simon (who later became the charity’s youngest trustee) who came up from Somerset. Paul and Peter had to dash home in time for another fund-raising event that evening. We were all elated at the auction’s £7,500 total.

 

• Amazement at the level of continuous fund-raising activity in all the local areas of each family. Realising that we needed to get beyond local fund-raising and reach the wider world. Being involved with the charity as a volunteer with the same group of friends and embarking on the first two single-charity Jeans for Genes (J4G) Days.

 

• Ocean’s determination to launch J4G onto a new level by inviting three other charities on board and in doing so reach the wider world and asking schools and workplaces to participate. Being invited to work on the first joint-J4G that took place in March 1996; Great Ormond Street Hospital fund-raising department subsequently took the campaign ‘in-house’.

 

• Hearing later from members what a difference the support group and charity made to them. After lonely journeys in which patients were passed from one type of clinic to another, with no-one able to join the dots between apparently unrelated symptoms such as recurrent stomach, respiratory and skin problems, the people who got in contact were overjoyed to find someone who recognised and often shared the difficult experiences, sometimes lasting years, prior to diagnosis. One mother responded to an advert that Ocean had placed in a paper. Another affected person was told by her regional consultant that he had found a CGD group she might like to contact. Having been frequently ill and ‘sickly’ throughout and since childhood, she discovered she was not ‘the only one’ affected and got in touch. Like other families, she and her husband entered a period of frenetic and continued fund-raising. All were keen to help the new CGD Research Trust realise its ambition to raise £500,000 by the millennium and to find a cure

 

• My delight, in May 1996, when the trustees – Ocean, Peter, Andrew, Steve and Geoff – offered me an initially part-time post working for the CGDRT. With three young children, I was able to work from home for a cause I felt passionate about. I had got to know a few of our families already but the trustees were certain that there were many more families struggling with lack of information about CGD among medics. Ocean and Andrew were desperate to find them. So the first task was to find a membership! The three CGD specialists already gave out our details to their CGD patients and I phoned every immunology department in the UK to request the same. Being enthusiastic but very green, I inadvertently trod on a few toes along the way but must have been forgiven as people began to phone me at the charity. (‘At the charity’ = a then rather cold room at home!)

 

• Jeans for Genes becoming the major source of income and its success allowing the trustees to consider providing support in addition to boosting research.

 

• The charity as being a ‘needs-led’ organisation, careful to find out what its membership wanted most. From the start, Ocean and Andrew took great care to ask people to tell them about their priorities. Would X be important? Would Y be helpful? This example set the ethos of the charity: to communicate as widely as possible and to listen to people’s needs. Conversations at the 1997 Family Conference revealed a consistent lack of understanding of the condition outside the established centres of excellence. We had a new target: to improve communication between the specialists with regional consultants and GP’s.  In 1998 we held our first Consultants Conference. First task: identify the relevant consultants! The conference had an immediate positive impact for our families. One of the members reported that his local consultant told him exultantly, ‘I’ve found a group who know all about CGD!’ What he learnt enabled him to adopt a new treatment strategy.

 

• The pattern of listening to our members, and then taking action, guided everything the charity did. It was key in bringing about each development over the years. Telephone conversations led to surveys and questionnaires on a range of topics. Among other things these resulted in the production of fact sheets, the provision of a psychology service, nurse study days, the significance of lupus-like symptoms, days for mothers, information on the symptoms in new-born babies, information sheets for GP’s – all illustrating the importance of constant two-way communication.

 

At the outset and for much of the time since, the trustees all came from affected families or were close to an affected family. Despite this, they never assumed they knew what everyone else wanted but always insisted on establishing membership priorities before taking action. On occasion the information was contrary to their expectation; nevertheless it determined their decisions. They were all awe-inspiringly committed, devoting time and energy even during times of their own family’s most difficult medical crises. That commitment brought intense focus on the priorities of research and the needs of the membership.

 

It only remains for me to wish the charity and everyone involved the very best of fortune for the next thirty years. I hope, by that time, a cure will have been found and the charity’s objectives will have been achieved.

 

We would like to thank Rosemarie on her hard work and dedication to CGD Society and for the support she provided so many families affected by CGD