The extraordinary character and determination of Nicky West, who has died aged 30, was an inspiration to those of us whose lives have been touched by cystic fibrosis (CF), the most common life-threatening genetic condition in Britain today. She had a unique ability to communicate about CF and, more particularly, about the campaign to raise money for a gene therapy "cure".

I first met Nicky last autumn when she spoke to an audience of businessmen and women about living with CF. I was there because my two-year-old daughter, Ella, suffers from the disease. No one in the room that evening was left unaffected by what Nicky said; most were moved to tears.

Stunningly beautiful, and with a charming personality, it was a mark of Nicky's selflessness that she took on these events for the Cystic Fibrosis Trust even though she knew that any medical breakthrough would not help her. "It's all too late for me," she said to me with a calm dignity. "But I am determined to ensure that I do everything I can to ensure it comes in time for children like Ella."

This was Nicky's overriding mission in her last few months, and she took on a hectic schedule. She spoke at Downing Street and Foreign Office receptions, and at dinners involving politicians, royalty, industrialists and entertainers. Thus did people like Cherie Blair, Sir David Frost, Richard Madeley and Judy Finnegan take her cause to a wider audience.

Her public engagements were carried out despite the tremendous pain and suffering brought about by a disease that attacks the lungs and the digestive system. Every day, Nicky had to endure two-and-a-half hours of physiotherapy, a constant stream of oral, nebulised and intravenous drugs, and overnight feeding though a tube into her stomach. Regular admissions to the Royal Brompton Hospital, west London, were the norm.

But Nicky never sought sympathy. Her determination and sense of independence motivated those of us who sometimes look to the future with trepidation and fear. She had a wicked sense of humour, which could be deployed with disarming effect on those tempted to patronise her because of her illness. Her email address -"poorlychick" - encapsulated both her fortitude and her acceptance of what was to come.

Nicky had always excelled, even before the ravages of CF overtook her life. Born in Wimbledon, south London, she left Surbiton high school with 12 GCSEs and three A-levels, and graduated from Brighton University in bio-medical sciences. In her early 20s, she became a City headhunter, a post she reluctantly gave up to accommodate the increasingly gruelling treatment regime needed to counter the disease's symptoms. Inevitably, her social life and tennis playing were affected too.

But she achieved more in her 30 years than most of us will in twice that time. Right up until her death, she was active in helping the Cystic Fibrosis Trust raise the £15m needed to give medical scientists the chance to make the final push in finding a cure. A few weeks ago, she spoke at Chelsea football club, in front of Tessa Jowell, Kenny Dalglish and Peter Beardsley, and was instrumental last month in securing a £1.5m grant from a charitable foundation towards the gene therapy research.

Nicky's aim was to give children like my daughter the health and opportunities she did not have herself. She will be missed by thousands. She leaves a loving family - her mother, Linda, and stepfather Tony, as well as her sister Sam and brother James.

· Nicola 'Nicky' West, campaigner, born April 24 1974; died July 20 2004