PCD AGM and Q&A 2020

PCD AGM and Q&A – 27th June 2020 (online)

Full video of our AGM is now available on YouTube:

 

Strange times and saying goodbyes

The 27th June 2020 was an unforgettable moment for the PCD Family Support Group for two reasons: Firstly, we bid farewell to our sensational chair of 17 years, Fiona Copeland. Fiona has achieved incredible things for the PCD community and the committee are immensely grateful to both her and her family for creating so much opportunity and support for those affected by PCD.

If that weren’t enough change to contend with for one year, the COVID-19 pandemic meant that we were unable to have our annual Family Day in person. For the first time in our charity’s 29-year history, we welcomed our friends and families affected by PCD into an online space for our Annual General Meeting (AGM) and a Q&A with our amazing medical teams from across the 4 specialist centres. This meant no Great Gappo to entertain the children, no mingling with other individuals and families to share stories and to hear about the latest developments in PCD research, and most devastatingly for some, no lunch!

 

The AGM itself

After introducing the committee, we kicked off with our formal AGM by highlighting some of the achievements this year. We also revealed our priorities for the year ahead, acknowledging the uncertainty that COVID-19 presents. Our outgoing treasurer, Beatrice Redfern kindly ran everyone through an update on the charity’s accounts pointing out that although we have cash reserves, we are expecting a drop in fundraising, as a result of the pandemic. We also announced our committee changes, which included saying goodbye to two of our wonderful and long-serving members, Terry Irwin and Sylvie Prouse, who will continue to volunteer in the future. We said goodbye to Beatrice and welcomed our new treasurer Abdullah Ihsan and we said a memorable goodbye to Fiona and elected our new chair, Lucy Dixon. Our AGM presentation can be downloaded here.

 

Introducing our new chair

Lucy Dixon has sat on the committee since 2014. Lucy has PCD herself and has previously held the role of Adult Representative. In her acceptance speech she said:

“I have PCD and I was diagnosed with it when I was 4 but I never met anybody with PCD until I was 21. I was having a rough time at university and I’d had a couple of infections and was having 8 weeks of IVs a year at one point […] and I reached out to Fiona [and the PCD group], who put me in touch with Bea.

If you’re someone who has PCD and you’re the only one in your family with it, your family are very accepting of it, but they don’t know what it’s like personally to live that experience. I think [that call with Bea] was the first time I had ever spoken to someone with PCD, and it was like looking in the mirror, because she sounded like me and we were both coughing and talking about [having PCD]. […] All the stuff that a lot of people would say ‘ugh that’s gross’ was a very normalised thing [for us].

 I’ll never forget that conversation or that moment, and it’s kind of gone from there. And I owe that experience to [Fiona], and I think there are a lot of people on this call that owe the experience of feeling connected with others […] to [Fiona]. So, if there is one thing that I will try to honour [Fiona] with, it is that I will try my best to keep this community together and to keep us growing. I think that, especially in these times, it’s so lovely to have this shared experience with people who know what it’s like”.

 

Poster Competition Results

After the formal handover of the chair position, our Comms Officer, Katie Dexter, announced the much-anticipated results of the poster competition. The committee were extremely impressed with the quality and amount of poster entries that we received and we were delighted to announce that all entrants will receive a little PCD-related gift and a certificate. The winners will also receive Amazon gift vouchers for their excellent work. The overall winner was Abigail (11) for her poster about ‘PCD and Me:’

The runner up in the under 10s category was Charlie (5) for his poster on ‘PCD and Me:’ and the runner up in the 10-16 category was Mia (15) for her poster on ‘PCD and the Importance of Physiotherapy and Exercise:’

 

All posters entered can be viewed here.

Your Questions Answered

We concluded the event with a Q&A session with doctors, physios, nurses and more from our medical community working across the four specialist centres. We would like to pass on a huge thanks to all of the medical professionals who gave up their Saturday morning to contribute to this; we all found it very useful indeed. We will upload a full list of the questions and answers to this section shortly.

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Keeping ahead of COVID-19

Covid-19 is very unsettling for all of our PCD community – we will be regularly updating this page with latest information and ideas on how to keep yourselves entertained whilst self-isolating.