Family Fun Days
Another very successful PCD Day / AGM was held on the 22nd June 2019 at the MK Hotel in Milton Keynes. As always, the day was a great opportunity to learn not only about the work of the PCD Family Support Group, but also about the latest medical and scientific research on PCD. The event was also a fantastic opportunity to meet and support other families and individuals affected by PCD.
The day began with the AGM that highlighted the activities of the Family support group from the past year, including the latest updates on the PCD Adult Health Service and various fundraising activities, which included a lot of running! The objectives and plans for 2019 / 2020 were outlined as was the re-election of Fiona Copeland as Chairman, Myra Tipping as Secretary, Bea Redfern as Treasurer, in addition to the other committee members. This will be the last term that Fiona serves as Chairman. A special thanks was given for her 16 years of tireless work that has truly transformed the lives of those impacted by PCD. She has been instrumental in raising awareness of PCD and bringing together many different medical bodies and stakeholders that are related to PCD. This has undoubtedly helped establish the diagnostic, paediatric PCD service and helped secure funding for the Adult Service, which was announced in late 2017.
As always, the day was filled with a variety of interesting and engaging talks concerning PCD. In the morning, Hannah Mitchison (University College London), gave an
interesting talk on the latest PCD genetics research. The talk highlighted the latest progress in understanding the 44 different genes that can lead to PCD, advances in genetic sequencing, and how the 100,000 genome project can help improve awareness and understanding of the genetic causes of PCD. This was followed by engaging talks from Anu Sironen (University College London), on the links between PCD and male infertility and Corine Driessens (Southampton University), on new and upcoming projects analysing the link between PCD and mental health.
Following lunch there was another great talk from Prof. James Chalmers (Dundee University) on bronchiectasis.
Specifically, he spoke about the latest progress in developing personalized medicine and antibiotic treatment to tackle each individual variant of bronchiectasis, as w
ell as the latest research into reducing lung inflammation and how best to mitigate lung damage caused by bronchiectasis. This was followed by an insightful and engaging talk from Euan and Gregor Copeland on what it is like growing up with and managing PCD daily. The day then ended with the usual Q&A facilitated by Stuart Copeland.
The children were entertained by the Great Gappo in the morning and in the afternoon had great fun learning more about PCD with a workshop led by Laura Baynton, Paediatric PCD Nurse Specialist from the Royal Brompton where they made pledges to their lungs and made their own special PCD Bears.
Special thanks to Fiona, the committee, and all the guest speakers for putting on another wonderful PCD Day!
The videos of the talks can be found here:-