EPIC Fundraising for Pulmonary Fibrosis Research

Here’s David Rogerson storyOn Sunday 25th May, I’m doing a charity walk raising awareness and funds for the team that are carrying out so much research and clinical trials for the disease I have, Pulmonary Fibrosis. Some of you may be aware that almost a year ago I was given 12 months to live and my only hope for any future is a double lung transplant, of which I’ve been going through the process for nearly a year now.The walk is called the community mile and is all connected to The Great West Run.  It’s incredibly difficult for me now to even walk a hundred feet without being breathless. I will be doing this with my oxygen connect as I couldn’t contemplate it nowadays without.  There are 50 of us doing it and it’s being covered on various radio stations and now regional TV.Please will you sponsor me to help the team that are working so hard to help me, it will truly be so appreciated.Here’s a picture of me with my granddaughter Violet who will be holding my hand all the way round.Thanks, Dave Rogerson

Here are a few of us from the ILD clinical and research team working hard (can you see it in our faces? 😂) and getting out of breath for our patients. Our aim is to raise money for research to bring hope for patients and their families. We are 12 staff and 39 patients/carers/family/friends, a big team of 51 in total - so far! Of these, 13 are running and the rest are travelling the community mile by foot or wheelchair, and with oxygen where necessary. Look out for us in our splendid red tops and look out for our flag – it’s going to be huge and it’s going to be EPIC!!!

Sorry for spelling mistakes in the previous version of Helen's story - here it is corrected:

Helen from Cornwall’s story

My name is Helen, pictured alongside 3 of my children (from left to right) Anita, Sylphi and Subita, who are doing either the community mile with me or the half marathon (and 1 of my 8 grandchildren – Darcey – who is also walking with me)

I was diagnosed with IPF in March 2020 and have now been living with this illness for 5 years. Before I was diagnosed I was fairly active taking daily walks in my beloved Lost Gardens of Heligan. I had not really heard of IPF when I was diagnosed so I am taking part in this event to firstly raise awareness of this life limiting disease and secondly, to raise money to fund further research into potential cures. 

My life now has slowed down. I am not able to walk far as the breathlessness takes over. Within the next few days I will be swapping my oxygen concentrator machine for oxygen cylinders. 

I am very grateful for the support groups that run (especially in Exeter) as I have met some lovely people who understand the daily struggles of this illness.

This fundraising effort is getting BIG!

So far, we have about 10 half-marathon runners which includes a mix of interested people including researchers, clinical staff family members - and 35 walkers for the charity mile, mostly amazing patients, carers and supporters with some staff doing that as well. I'm hoping that more people will send in their inspiring photos and stories so I can post them. Thanks to one of these wonderful patients, here's what Helen has to say:

Here's an update from George, PF patient and amazing ambassador for PF research (see the short video clip above). This is what he's saying about the upcoming Great West Run:

Hi my name’s George Vosper.  I’m an Army veteran, a cancer survivor and I live with PF.  PF scars the lungs making it increasingly difficult to breathe.  It literally squeezes the life out of you. Average life expectancy is 3-5 years.  I survived cancer but I won’t survive PF.  Thanks to research better treatments have been found to slow the progression down but there is still no cure.

I’m taking part in this Walk for Hope because I want to show my support for those who work tirelessly caring for us and for those who carry out vital research into better treatments and eventually a cure.   I want to help them to help us by raising awareness and funds.

Walking a mile won’t be easy but I take great strength from my fellow PF patients, family and friends who are also taking part, some who need oxygen and others who are being pushed in wheelchairs or in mobility scooters.  I also walk in memory of my friend and fellow Army veteran Keith Stanley who took part last year and who is sadly no longer with us – taken by this cruel disease.  With their encouragement and your support, I know I can do this.

The picture shows us taking part in the event last year with Keith and Debbie Stanley.  Keith is in the mobility scooter.  Sadly PF has taken Keith from us but his memory lives on.

Training for our runners (some at least!) is now officially underway and this picture taken by Sarah from the treadmill at 29 degrees centigrade of heat and 1200m altitude in Uganda, highlights how dedicated and committed we are to this big team event... 

There's still time to join in the fun if you haven't signed up to the Great West Run yet. We are offering free team T-shirts to all our walk and run participants. It's going to be a great day!!

The GREAT WEST RUN/WALK - We're doing it again to raise money for EPIC PF research and hoping that it's going to be even bigger and better and more fun than last time - we hope to see you there!! 

Soon our front page will be updated and we'll be raring to go....