OUR CYSTIC FIBROSIS JOURNEY
The first time we heard about Cystic Fibrosis was when our close friend’s daughter passed away at the age of 17. Our friend, Philip White, started a campaign to raise money for the Cystic Fibrosis Trust in his daughter’s memory. My husband, Vipul was part of ‘Something 4 Sarah’ campaign and he took part in various charity fundraising events, one of them being a charity calendar in which he and other friends modelled their good looks. The overall campaign managed to raise more than £30,000 over 18 months.
For further details visit www.something4sarah.co.uk.
I was pregnant at the time and was really touched by the courage and determination of the family, which led me to further educate myself interims of, “What is Cystic Fibrosis?” What I discovered was truly surprising, mainly because the statistics indicated that Cystic Fibrosis affects many people, 1 in 25, however there is a lack of awareness and publicity around the inherited diseases. This inspired me to do a half marathon for the first time ever and I managed to raise more than £300 for the Cystic Fibrosis Trust. In the process of raising the money, I spoke to many different people and many were relatively unaware of the inherited disease, its’ causes, symptoms, treatments and the fact that there is no cure. I soon realised that Cystic Fibrosis is the UK’s most common life-threatening inherited disease and that the Cystic Fibrosis Trust is the UK's only national charity dedicated to all aspects of Cystic Fibrosis.
Since running the half marathon, the Cystic Fibrosis Trust has really stayed with me; I was very disturbed by that fact that people do not know much about it, thus I felt like wanting to do more. I am a teacher, surrounded by children everyday, we also have a 20 month toddler and just to think what these families go through is unimaginable.
We have three luxury flats that we were planning to sell. Two of the flats are located in the exclusive village of Dickens Heath and one in the ‘award winning development’, The Landmark Development, in Canary Wharf, London. We have decided that instead of selling the three flats we are hosting a charity competition and hope to raise in excess of £50,000 for the Cystic Fibrosis Trust but more importantly raise the awareness of this killer inherited disease that has no cure and is killing so many children in this country and affecting so many families.
WHAT IS CYSTIC FIBROSIS?
- Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases.
- Over 2 million people in the UK carry the faulty gene that causes cystic fibrosis, that’s around 1 in 25.
- Cystic Fibrosis is caused by a single faulty gene that controls the movement of salt in the body.
- Cystic fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them up with thick sticky mucus resulting in infections and inflammation making it hard to breathe and digest food.
- Each week five babies are born with cystic fibrosis.
- Each week three young lives are lost to cystic fibrosis.
- To find out more visit www.cftrust.org.uk
Currently, there is no cure for Cystic Fibrosis. The Cystic Fibrosis Trust funds research to find an effective treatment for Cystic Fibrosis through gene therapy and it is believed that this is going to be the nearest thing to a cure in the foreseeable future.
Through research, better understanding and treatment of Cystic Fibrosis, life expectancy is increasing. When the Cystic Fibrosis Trust was founded in 1964, a child was lucky to live over five years. Around half of those with Cystic Fibrosis today can expect to live over 35 years - not good enough but getting better.
WE CAN MAKE A DIFFERENCE
Money raised will support the work of the Cystic Fibrosis Trust in many ways: such as research to find a treatment and control the symptoms of Cystic Fibrosis, providing information, advice and support to families and improving the care of those with Cystic Fibrosis in hospitals across the country. This will benefit many of the 8,000 babies, children and young adults living with Cystic Fibrosis throughout the UK. Cystic Fibrosis is one of the UK’s most common, life-threatening, inherited diseases and there is currently no cure.
The Cystic Fibrosis Trust currently invests around £4 million each year in a programme of research into gene therapy which we are confident will provide an effective treatment for Cystic Fibrosis. This should help prevent many of the early deaths, around three per week, that we currently see. The Cystic Fibrosis Trust also spends around £800,000 per year on non-gene therapy research that will have important and/or imminent clinical benefit to those living with Cystic Fibrosis. They are also funding a new peer review project which is ensuring good specialist care from within the NHS.
