A week can seem like a long time in the world of CF, the genetic condition affecting more than 10,400 people in the UK.
People with cystic fibrosis suffer from a build-up of thick sticky mucus in the lungs, digestive system and other organs. This is because the gene affected by CF controls the movement of salt and water in and out of cells. When you live with CF your daily life is constantly challenged by symptoms that can affect your whole body.
This year’s campaign focus for CF Week centres around time. From the time it takes for people with CF to receive the precision medicines they need, to the length of time it can take for treatments to get their symptoms under control.
It’s also very relevant to the families of people with CF, who may find that their quality time together is drastically affected by CF.
What’s happening in the world of CF?
The simple answer is lots! And the CF Trust has been involved in so many of the research projects currently underway, making a difference to people’s lives on a daily basis.
Genetic testing – Action Medical Research and Great Ormond Street Hospital are part of a study being run by Professor Lyn Chitty & colleagues to create a non-invasive test enabling analysis for the cystic fibrosis gene in an unborn baby’s DNA. This test would be conducted from fragments of the gene that enter into the mother’s blood stream. The test would replace the current prenatal test of amniotic fluid that carries a risk of miscarriage.
Rare CF screening – of the 2,000 different mutations of the CF gene, around 90% of those with the condition have the most common mutation. Baut what about those other 10%? This screening project aims to develop drug screening methods for drugs that could successfully treat the much rarer mutations.
Stem cell & gene editing – this research is looking at whether stem cell technology and gene editing could be used to replace damaged CF-affected lung cells with new, healthy and unaffected lung cells. This could ultimately become an alternative treatment to lung transplants. There is also additional ongoing research on gene editing to permanently correct the gene that causes CF.
These research projects are all very exciting, with huge potential for improvement for those living with CF. Without the support from charities such as the Cystic Fibrosis Trust, many of these projects may not have the investment they need to develop and complete – research which could lead to treatments that could greatly improve the quality of life of someone that lives with CF.
So donating to the CF Week campaign has never been more important. Not only do these funds help support the research, but they also help provide a support network and resources for those who live with the condition. There’s so much information and support available to tap into, meaning you’re never alone.
Make this Friday 22nd June a Bright Friday, wear your yellow outfit and help raise awareness of the CF campaign!