Nancy is a little girl with Cystic Fibrosis who lives in my town, I met her and her parents when I first started running. To raise awareness of CF, they literally run with Nancy at many events, you may have seen them or heard the toot of their horn. I knew nothing of CF until I met Nancy & now I want to raise funds and awareness for the cause. Please read Nancy's story from her Mum, Lucy....

Nancy was diagnosed with Cystic Fibrosis at the age of 3 weeks old by the infant heel cprick test that all babies have when newborn. The shock was indescribable and the grief that hit us all and still continues to was like an earthquake with us at the epicentre. I say this because so many people were affected by it. 

Cf is a life limiting genetic disorder that affects all the organs in the body. It's caused by a faulty gene that 1 in 25 of us carry which among many things creates a sticky thick mucus. This mucus is a perfect breeding ground for infection which causes irreversible damage to all organs.

Cf can be treated with medication , but it isn't a cure and the average life expectancy is 37. By this age most people with the disease will have endured at least 20 years of greatly reduced lung function, consumed literally hundreds of thousands of tablets and endured months of hospital stays with endless physio and intravenous medication. Some people will have been fortunate to recieve transplants and some will not. Needless to say these people will have been fighting to stay alive ALL THEIR LIFE.

Nancy is now 4, she has only had one hospital admission so far thankfully. She lives life as every 4 year old should.. Being cheeky and joyful. However she also spends 2 hours every day taking medication and doing physio and at least 4 hours a day eating because cf reduces her bodies capacity to absorb nutrients and fat. So in that sense she's not like your average 4 year old , who would have spent that time playing. Nancy is a fighter and very strong willed, something we are so grateful for as she will need this tenacity to carry her through many hard physical and emotional battles.

Currently we endeavour to raise awareness and funds for the uk cf gene therapy consortium. Gene therapy is a way of treating a disease by adding a copy of a healthy gene to the do the job of a faulty one. Since the CFTR gene was identified in 1989, there has been hope that this knowledge could unlock better treatments for cystic fibrosis, which is caused by a faulty version of the gene.

UK CF Gene Therapy Consortium (GTC) are working to develop a gene therapy product with the potential to 'correct' the faulty cystic fibrosis gene in the lungs. The GTC announced results fom the Phase 2B clinical trials of its Wave 1 gene therapy product  in 2015. The next step will be to take the product to Phase 3 trials, the cost of which can be in excess of £100million.

So.... Claire here again, I'm asking for your support to help get these trials to the next step, in the hope that one day we can see some effective, life changing treatment for CF sufferers like Nancy.  

In the meantime she'll keep smiling, making her parents proud and reminding People like you and I how lucky we are to have our health and be able to do crazy things like run 13.1 miles!!!!! 😃

Thank you for anything you can spare.

Claire x