Everyone who knows me knows how strongly I feel about the CGD Research Trust, the only UK charity dedicated to improving the outlook for all those affected by chronic granulomatous disorder (CGD). And this is why.
I have been involved with the charity since its early days, inspired by a local family, and became its first member of staff. I am privileged to have got to know many more wonderful individuals and families affected by this rare genetic condition*. Determination in the face of whatever is thrown at them, courage and a great sense of humour seem to go with the territory!
Living with this unpredictable condition is wearing, stressful and sometimes devastating. The CGD Research Trust funded research projects give hope; the support services – clinical nurse specialists and clinical psychology service – give advice, encouragement and practical daily help; CGDRT information is rated by families and medics alike.
The CGDRT has directed £3.7m into research projects and has funded pioneering work; its support services fill a vacuum for people with CGD. Families tell me what the charity means to them. Last week Lesley, a mum, said ‘I don’t know what we would do without the charity. I really don’t.’
£5.50 will provide a booklet; £100 will provide a visit from a specialist nurse or a 3 hour session with the psychologist; the charity needs £46,000 to continue a successful ground breaking gene therapy project that will help resolve the problems in CGD and other conditions.
Every ££ you give will make a difference and help the charity continue to do its utmost for our families. Thank you!
*CGD is caused by a faulty gene. This makes the white blood cells unable to produce a cellular bleach to fight off certain bacterial and fungal infections, leaving the person susceptible to serious illnesses and sometimes fatal complications from exposure to things that would not harm anyone with a fully functional immune system. For example, dust from building works, grass or hay may harbour harmful fungal spores that could result in a potentially fatal pneumonia; a local bacterial infection can result in abscesses forming on vital organs.
