You may have seen us talking about the support for Cystic Fibrosis Trust (CFT) a lot lately. It is because this year Madison Brook International has chosen CFT as a partner charity for 2019.
First things first, what is Cystic Fibrosis? CF is caused by an inherited faulty gene that controls the movement of salt and water in and out of cells. Due to this a thick mucus builds-up in the lungs and other organs. A person with CF faces a wide range of challenging symptoms like difficulty with breathing and vulnerability to infection. One out of 25 people is carrying the gene without knowing it, and if both parents have it, the chances of a child developing CF is around 25%.
The disease is detected during new-born screening as well as through simple carrier and antenatal tests. It is extremely tricky to diagnose CF due to various mutations and symptoms being similar to other lung diseases such as asthma and bronchitis. Even if spotted in the early stages CF cannot be cured completely. The effects can be mitigated by medication, physiotherapy, exercise and a healthy diet, personalised healthcare, and in extreme cases transplantation.
The CFT is working to make lives of people affected by the gene unlimited. Their activity is focused on:
- Funding research programmes
- Developing a Clinical Trials accelerator platform to introduce new treatment opportunities
- Supporting CF clinical teams working in the NHS
- Communicating with patients and informing society about CF
We are incredibly happy to share the news that a highly anticipated drug called Elaxcaftor has just been tested and is confirmed to be ‘generally well tolerated’. This new drug combined with existing medication can be used to mitigate effects of certain types of CF mutations.
The Chief Executive of CFT David Ramsden said “Elaxcaftor could radically transform the lives of nine in ten people living with the condition in the UK”. Further collaboration between government, NHS and CFT is still needed for the medication to actually reach ones who need it, but the progress is promising.
CF is particularly close to the hearts of everyone at Madison Brook International since we tragically lost Clare Ward a former colleague to the disease. Our first fundraiser was a Charity Quiz night on the 29th May which managed to raise over £3,330!
Nevertheless, the fundraising effort has contined with the Great Slides 65 km walk in the Surrey Hills on the 8th June. Despite some exceptionally unseasonable weather this was completed by the MBI Team in a very respectable 15 ½ hours.
With a total of £10,000 raised to date, we are aiming to keep the same pace for the rest of the year!
Should anyone wish to donate to this great cause please click here.