9 minute read
Chairperson's Chapter
It really is an honour and a privilege to be putting words on a page as the new Chairperson of Cystic Fibrosis Ireland. I remember when my son Senan was born in 2014 and his CF consultant spoke in our first meeting with him to me and my wife Sheena about us facing our “New Normal”, little did I know that 6 years later I would be fortunate to be the new Chairperson, working with a passionate community and an incredible association to continue the support and work that Cystic Fibrosis Ireland stands for.
Before I introduce myself, it would be remiss of me not to acknowledge the fantastic leadership, work, passion and goodwill shown by the outgoing chair, Patricia Duffy-Barber. Patricia had taken on the tenureship of Chairperson when I first became involved at the board as the incoming Treasurer three years ago. As the first PWCF to hold the office of Chairperson, I truly believe that she has led the association through a period of distinct transformation, she has been and continues to be a trailblazer for PWCF and it has been an honour to serve alongside her on the board and indeed the Staff and Finance committee. Thankfully, Patricia will remain involved on the S&F committee and indeed she will continue to support the board in her new capacity as Vice-Chairperson, both of which I know I am very appreciative of.
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So then it brings us to my first communication with you all and I am writing this from my spare bedroom in my family home in Greystones, which has of course turned into my home office, my “Cystic Fibrosis Ireland board room / Staff and Finance meeting room”, the list goes on. Like everybody, we have all managed to pivot and adapt to “Life with Covid” and it has been very interesting to see how it has impacted us all in many ways. Personally, we have managed to cope well as a team, we being myself, my wife Sheena and our three children, Rian, Senan and Fiadh. We of course have needed to adapt, focus on the more simpler and important things in life and enjoy spending time with each other. I was born in Greystones, Co. Wicklow and I now live there with my family, blessed to be beside the sea and have the Wicklow mountains on our doorstep.
Being the father of somebody living with Cystic Fibrosis, I have learnt that there is more to being a Dad than just the title, you need to be a role model in a number of ways. We are very lucky to have Senan under the care of the top class team in Crumlin who have consistently given us the peace-of-mind relating to the management of Senan’s CF. Striving to lead as active a lifestyle as possible and encourage movement is the key to the future for living with Cystic Fibrosis and I have been very fortunate to get to know some of these role models that are in our Irish community. We need to continue to give them that platform to share their ideas and enable them to change the future for Cystic Fibrosis. From a fundraising standpoint, I have been lucky to take part in (not race!) a couple of marathons for Cystic Fibrosis Ireland here in Dublin and support some fundraising efforts in my own workplace. I like to stay active and keep myself moving and this is even more important during the testing times that Covid has brought but I am definitely much more appreciative of the new day-to-day. Keith & Senan with CFI Ambassador Michael Carruth promoting Christmas Jumper Day for CF
The year 2020 will definitely be remembered as a turnaround point in human history. Many people have lost their lives to the pandemic around the world and so many others have been impacted in such a way that they cannot revert back to the “Way it was before Covid”. People have lost their livelihoods, their routines, their sense of purpose.
When I think about 2020, I personally will look back on the year with a sense of gratitude for replacing the “Everyday life” that I had with positive things that I am surrounded by now. Positive things including time with my young children that I would never have had prior to this. It is going to be impossible to go back to the way it was because we have all been through so much internal change in our own lives.
I think that this pandemic will have changed people and society for the better in the long-run and whilst we are still in the midst of such uncertainty, the hope that the promise of the vaccine will bring will give people that resolve required to get through the dark times that still linger ahead. 2020 has been a year where nature has affected everybody, not just a select group or portion of humanity or society or the select few. The crisis has had a global impact. As a society, it has helped to normalise “people” but there remains systemic flaws in how we treat each other. As the restrictions will begin to lift in the coming weeks / months ahead, I firmly believe that our psychology has changed. Sheena & Keith with their children Senan, Rian & Fiadh
The McCabes
Keith and his wife Sheena with their children (LtoR) Senan, Rian and Fiadh
People will hopefully be less eager to spend all of their money on the latest trend or the new fad, hopefully we will begin to value each other more, our friends, our families, our wellbeing, over material gain. Hopefully, when the pandemic passes and life begins to return to “normal” we will all value something more than anything else, human connection.
With a quick search to identify the 10 most used words of the year so far, a number of them stand out for differing reasons.
Firstly, it is the ones that perhaps many of us would guess and assume are in the top 10 for 2020. Covid, Covid-19, Coronavirus, Pandemic, Facemask, Corona and Social Distancing. These can arguably be lumped together under the “Pandemic Banner” and are words that everybody has grown to be so tired of hearing about. The daily briefings with the chief medical officer, stories on news feed, wondering about how many new cases there have been in our country / county / town, how many people have sadly lost their lives to the virus, the new habits, the worry, the unknowns, the shared challenges and indeed the additional burden of living with CF or having a family member with CF during a global pandemic.
However, when I was reading the list it was the other 3 words that struck more of a chord with me and my new role as Chairperson of CFI.
Progress
2020 has absolutely been a year of progress for our association and we have been very lucky to see a number of new treatments, medicines and initiatives come to the fore during 2020. Being the parent of a young child with Cystic Fibrosis, I always have my eyes open to progress and how not only Senan’s life, but the life of every person around the world living with CF can be improved in some way. The vision that I know most parents of a child with CF have for their children is to live a “Normal Life”, whatever that materialises to be.
My vision for the rest of 2020 and into the coming years ahead is that we continue to make progress in everything that we do. If we can focus on small wins, the incremental gains, progress the research projects, the treatment protocols, the tips and tricks, the exercise ideas, the social initiatives, the fundraising campaigns, the collective impact that we can make to the future for people with CF and their families are limitless.
I know that the wider CF community in Ireland, the branches, the Staff and Finance committee, the Board and indeed the full team that work in the association will continue with the progress we have made and will continue to make into the future to better the lives of people living with CF.
Truth
The value of trust in our association and the trust that we place every day into the hands of the teams, the researchers, the physiotherapists, the dieticians, each other as people living with CF or indeed family members / friends of PWCF, is invaluable.
Our association and our community needs to continue to move forwards with a focus firmly on the truth and indeed on the trust that we place in each other. The honest approach and the drive for fairness for all is what will continue to make this association stand apart from so many others.
We need to maintain honesty, we need to be open in our feedback, we need to challenge the status quo and we need to continue to seek for the best in class for everybody living with Cystic Fibrosis. Whilst some of the latest medicines have been significant for many people, there are still many that do not have access to these medicines for varying reasons. Our honesty and our direct approach will be a strong component of our direction in the coming years.
Sustainability
Typically, this word is used with a view on the environment and the sustainability of any initiative but for me, it is about the sustainability of PWCF living fully with their condition. It is also about the sustainability of the association and the work that we need to continue.
As we look beyond 2020, the focus will pivot to research projects and the development of further treatments for people with CF. We will continue to work to secure placements for staff members in hospitals and clinics, we will continue to work on innovative therapies and we need to look into ways in which we can encourage more people living with CF to plan for their futures, of which the Independent Living framework painted a fantastic viewpoint forwards for. Being sustainable as an association is also a key component of our focus in the coming years, evolving our fundraising concepts, developing the supports and grants that our members need and sustaining ourselves to provide help and guidance where it is needed.
So in conclusion, looking forward to my new role, it is one that I am extremely excited about. I want to thank Patricia again for her support over the past three years. The prospect of working with so many fantastic people within the branches, board and the association itself is one that fills me with such optimism. We need to speak out, we need to be brave and innovative and we need to continue to strive for great opportunities for all people living with Cystic Fibrosis in Ireland. We need to work on Progress, Truth and Sustainability, all whilst maintaining our own version of Human Connection.
Thanks,
