Spalding man Ron Flewett (53) is fighting alongside the British Lung Foundation (BLF) to raise awareness of the lung disease idiopathic pulmonary fibrosis (IPF).
Ron was diagnosed with IPF earlier this year and has since been active in south Lincolnshire, Westminster and the EU parliament, with the aim of raising awareness and improving localised services for this little-known disease.
In July, Ron joined a delegation of IPF patients and carers from around the country in Westminster for the first parliamentary meeting on the disease.
In September, he represented the BLF in Brussels, for the launch of the EU IPF patient charter, during which he was able to meet with MEPs sympathetic to the cause.
Ron also plans to bravely cycle 100 miles and compete in triathlons next year to raise funds for the BLF.
Most recently, he met with local MP John Hayes to talk about IPF service provision in the area.
Mr Hayes was inspired to take on Ron’s case and help him raise awareness of this devastating disease and has held talks with the Secretary of State for Health, Jeremy Hunt.
IPF has been on the rise in the UK for decades, and now kills around 5,000 people a year – more than conditions such as leukaemia.
However, awareness remains low, and there is no known cause or cure. As a result, the disease acts with often-devastating speed: barely half of people diagnosed with IPF are still alive three years later, and just one in five will survive five years.
Ron told the Free Press: “This is a nasty disease that so little is known about and I’m determined to change that.
“There just isn’t enough information to support patients and their carers, which is why raising awareness is vital to help generate more funds for more research.”
He added: “That’s why I’ve joined the BLF to encourage policy makers to help the UK move forward in providing better services and support for people with IPF.
“I am so glad that my MP has listened to me and is dedicated to doing what he can to help IPF patients in this area and across the UK.”
Mr Hayes said: “Before I met Ron, I knew very little about IPF but meeting him renewed my determination to do all I can to help him and others like him.
“I particularly commend the work of the BLF in their research into IPF and improving support for patients.”