PCD Research
London Landmarks Half Marathon Runners for PCD Research
We are delighted to have 16 people running the London Landmarks Half Marathon April 2023 and fundraising for us! Help us raise our goal and cheer them on at the finish line!
Story
Primary Ciliary Dyskinesia (PCD) is a rare inherited condition that affects 1 in 6,000 people in the UK.
Motile cilia are the microscopic hairs that beat in the airways and sinuses, clearing out secretions and infections. In PCD, the cilia are abnormal and unable to move in the usual way, such that secretions and infections affect the lungs, sinuses, ears and nose. Cilia are also important for the propulsion of sperm, so fertility is commonly affected as well.
At present PCD is managed by chest physiotherapy to try to prevent and slow lung function decline. There are no dedicated treatments for PCD, instead current management has been borrowed from experience with people who have cystic fibrosis (CF).
PCD is a life altering and life shortening condition. People with PCD have been found to have worse lung function than those with CF. This will mean for some people that they will need a lung-transplant.
While for people with CF, there has been an active program of research, that has now led to breakthrough drugs that almost cure CF, sadly these drugs are not suitable for people with PCD.
While children and adults with PCD may look healthy, unfortunately PCD is a progressive disease, where lung function declines over time. At present there arent medications that can stop this or restore cilia function.
People with PCD face huge challenges from the disease, and an enormous treatment burden of hours of daily chest physiotherapy, with frequent courses of antibiotics in an attempt to reduce the rate of lung function decline. Despite this, some people with PCD will still need lung transplants.
Therefore, PCD Research was founded with the sole aim of improving treatment options for people with PCD, by funding important and life-saving research. PCD Research is the only charity globally with the sole aim of raising money to fund potentially curative research into PCD.
To ensure that the most promising research is funded, we have an international, independent, scientific advisory board comprised of experts in the field, who robustly scrutinise grant applications. Academics in the PCD Research community have been delighted to offer up their time to do this, and are excited at the possible future research opportunities PCD Research will facilitate.
We really need research now, to help people with PCD breathe easier in the future.
Find out more about at PCD Research including our international scientific advisory board, how to fundraise for us, and why research into curing PCD is so important.