PM programme provides an opportunity for our director, DR Liz Nelson, to talk about CGD
Staff at the CGD Research Trust were delighted to get a call from PM journalist Olga Smirnova, inviting us to take part in an interview on Radio 4’s daily news and views programme. Olga wanted a representative from a tiny charity to talk about fundraising and director Dr Liz Nelson was keen to talk on behalf of the CGD Research Trust. PM has a wide listenership and the invitation provided a really wonderful opportunity to talk about the charity and the issues we face.
Earlier on Thursday, 13th February, news broke of best selling author Terry Pratchett’s £500,000 donation to the Alzheimer’s Society. Alzheimer’s is the most common form of dementia among older people. Dementia is a brain disorder that seriously affects a person's ability to carry out daily activities. Mr Pratchett, recently diagnosed with Alzheimer’s, wanted to highlight the difficulties that small charities face in fundraising, particularly in fundraising for research. As we all know lesser-known and more common illnesses need to be talked about in order to be funded better. ‘1,000’s like me don’t get heard’, Mr Pratchett said.
The PM Programme wanted to focus on the plight of smaller medical charities in getting seen and heard in order to fundraise and introduced Dr Liz Nelson, director of the CGD Research Trust. Liz told listeners that chronic granulomatous disorder (CGD) is a rare gene disorder, resulting in serious problems such as infections of the lung and bowel. The incidence is 1 in 100,000 and the CGD Research Trust is in touch with 190 families. This means that there are people who are either undiagnosed or who have not contacted CGD RT. Lack of knowledge of the condition can also mean that illnesses are mis-diagnosed – for example, in the instance of bowel problems, Crohn’s can be misdiagnosed instead of CGD. “The charity is tiny and so it is important to get talked about and to show how much, and how well, we spend funds in research and support services” she commented. Liz feels that, for tiny charities, umbrella groups such as the Genetic Interest Group, (GIG) may help in raising awareness. CGD RT has been a member of GIG from the mid 1990’s. Our own charity works with others in a variety of ways and is a founding partner of Jeans for Genes. This has enabled us to fund much research – for example, over £1 million will have been spent at the Institute of Child Health into CGD oriented research. She agreed with Mr Pratchett’s view that “Speaking about a condition will help to lift a taboo’.
Representing a charity at the other end of the spectrum, Dr Julie Sharp, Cancer Research UK, concurred that there is a difference in attitude to cancer now, which has been brought about partly by people who have been willing to tell their stories. Liz observed that to people affected by illness it is immaterial how many others are affected. However, it helps greatly to explain to the general public that there are 8,000 genetic conditions, and one in seventeen people will suffer from a genetic condition at some time in their lives. As has been the case for other conditions such as cancer and heart disease, awareness of the condition must be the fore-runner to fund-raising. It will also lift the taboos that exist and that many people face in coping with a genetic illness. ‘I would like to see that taboo disappear’, she said ‘and people talk about the awful things they have to suffer having a genetic disorder’.
For more information on how you can help raise funds for our research projects and suport services, you can:-
click on the 'Get Involved' tab above and organise your own event or sponsor one of our marathon runners
visit www.BigCharityQuiz.co.uk
visit www.jeansforgenes.com
IMPORTANT NOTE :
The information contained on this website is intended only as a guideline, not as a substitute for medical advice. Always consult your doctor if you or your child has any CGD symptoms or concerns.
© 2001-2007 The Chronic Granulomatous Disorder (CGD) Research Trust
Registered Charity No. 1003425 email:cgd@cgdrt.co.uk
The CGD Research Trust is a member of the Association of Medical Research Charities (AMRC), the Genetic Interest Group (GiG) and an associate member of the International Patient Organisation of Primary Immunodeficiencies (IPOPI)
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