Hello! We hope all our families and friends with PCD are keeping well. Not sure about you, but it has been a long winter for our committee, with seemingly no end of admissions and appointments. Some years just seem to be like that! With spring in full swing, we are all enjoying there being fewer respiratory viruses and infections circulating and having more time to get out and exercise with the lighter, brighter days. We hope you are too.
Here at PCD Support UK we have been busier than ever over the past couple of months, putting plans in place for our 2023 Medical Board meeting and a revamped PCD Family Day for 2023 (trust us, it’s going to be EPIC). Since the beginning of the year, we have been sending out our monthly newsletter and really recommend you sign up by scrolling to the bottom of our website. Our newsletter will always bring you the latest tips and information about PCD, whether you are a parent, a person with PCD, or a professional.
We are waiting for the final checks to go through on the PCD-ENGAGE clinical trial, and we know that lots of you are very excited to sign up and to enrol. Thank you for being patient and trust us, it is going to be huge! To find out more about it, visit our dedicated trial information page, here.
If you haven’t already, please make some time to listen to our fantastic Vice-Chair Abdullah Ihsan speaking on the Rarely Heard podcast about his experience as a British-Pakistani Muslim man living with PCD. The second episode features the wonderful Amanda Harris - Clinical Nurse Specialist at Southampton hospital, who gives an incredibly moving insight into her career working in PCD. Head to our news section for more!
This year we are working harder than ever to stay in touch and to keep our charity evolving. As you might (or might not know), we are only a tiny team of 10 volunteers, with lots of plates to juggle! You can always help us out by fundraising for us and by spreading the word about PCD! Lastly, we love hearing your news and achievements, so please get in touch with us if you have something to share by emailing [email protected].
Sending you and your family our warmest wishes,
Lucy Dixon (Chair of PCD Support UK)