Family Fun Days
Every year we hold a Family Fun Day/AGM to support people with PCD.
Our latest event was held on Saturday, 30th June 2018 at The Hilton Hotel, Milton Keynes. This was another fantastic event and a great opportunity for friends and families impacted by PCD to meet and network in an informal and enjoyable setting.
The day began with a welcome from Fiona Copeland, Chairman of the PCD Family Support Group, and an introduction of the key speakers. The first component of the day was the formal AGM where Fiona detailed the minutes of the last meeting (including updates on the new Treasurer, Beatrice Redfern, and the latest updates on the PCD Adult Service). This was followed by a summary of the aims and objectives of the group (supporting families with PCD, raising awareness of PCD, helping to promote research, supporting the NHS PCD services, and fundraising to support all of the above). This was followed by a summary of the accounts by Beatrice, and the outlook for 2018, which was formally approved by the audience.
Following the accounts, Fiona then detailed the plans for 2018, which focused on implementing the PCD Adult Service, developing specialist centre representatives, a redistribution of committee work, and a continuation of the PCD Medial Board meetings (which already took place for 2018). The formal AGM was ended with a special thanks to Andy Bush, one of the founding members of the PCD Medial Board who stepped down in 2018, and Mick Wilkin, who formally stepped down as Treasurer of the Family Support group in 2018 after 14 years in the role. Finally, there was the formal election of officers. Fiona was elected as Chair for another year, Myra was elected as Secretary, and Beatrice was elected as Treasurer.
After the formal AGM, there was a fantastic series of talks, starting with James Thompson from the University of Southampton, who has developed a mechanism to bring microscopic images of ciliary cells to life using 3D printing. This is designed to help those affected by PCD better understand how their cilia function and what specific cell abnormalities lead to certain problems with cilia. James also put together an interactive stand and quiz during the event, which was a great opportunity for people to see examples of the 3D printing and learn more about the different types of ciliary defects.
Professor Chris O’Callaghan from UCL then provided a fascinating talk on the development of different diagnostic methods within PCD and a look ahead into the potential mechanisms to restore ciliary function in years to come. He took the audience through the development of nasal brushing, electron microscopy, and high frequency video recording, all of which help determine any abnormalities in how the ciliary are beating. These methods were applied as part of the national diagnostic service across the Royal Brompton, Southampton, and Leicester. However, looking forward Professor O’Callaghan, highlighted how a better understanding of the genes that impact PCD could lead to ‘personalized medicine’ that directly targets, and in the long run, could even reverse the specific genetic abnormality in the cilia. However, until this comes into place everyone with PCD should keep their lungs as healthy as possible!
The audience was then split into two groups. One had a talk of the benefits of physio from Victoria Bright from Southampton Hospital and the other had an interactive session on the benefits of Yoga by Anna McEvoy, from Whitespace Studio. The groups then switched round after lunch. Both of these session were very insightful and great fun! The final talk of the day was from Dr Tom Semple from the Royal Brompton on X-Rays and CT Scans. He provided great insights into how both X-Rays and CT Scans can be used to detect and monitor the impact of PCD over time.
The day ended with a Q&A sessions with Fiona and the speakers. This was a very successful, enjoyable and informative day, with many families attending. Thank you to everyone involved in making the day a great success!
Please note that we have a specific Scottish PCD Day upcoming on Saturday 22nd September 2018 at The Venue Studios, 67 Hope Street, Glasgow, G2 6AE. This is an opportunity to learn more about PCD and meet other families affected by the condition. We will hold a number of talks throughout the day from PCD experts that will offer a great opportunity to learn more about the condition. There is also plenty of opportunity to ask questions. We provide entertainment for the children.
All PCDers and their families welcome.
Please register on Eventbrite