The People of CFI

ALL ABOARD

It is fair to say we have all adapted to a new way of life over the past year, delving into the world of zoom meetings, swapping gym sessions for online classes and changing how we interact with friends and family.

CF Ireland understands that this has been an isolating and lonely time for many within our community and would like to reassure members that we are here for support. It can be tough to reach out, so to make it easier we thought we would reintroduce ourselves.

Cystic Fibrosis Ireland is run by a National Executive Committee made up of volunteers with a direct connection to cystic fibrosis. The board of CFI continue to meet virtually to discuss the direction of the organisation and issues facing the CF Community.

Keith McCabe, Chairperson

Eastern Branch, joined board in 2017 Business Executive

I got involved with CFI originally because my son, Senan (age 7), has CF. I reached out a few years after he was born and it ultimately resulted in my joining the board.

There have been multiple highlights of my time with CFI. On a personal note, it has been the numerous fundraising initiatives that I have been involved in, most recently completing 65km run over 65 Roses Day.

On a broader level, being a parents' voice through the “Orkambi campaign” and ultimately joining the board was memorable and a decision I have never regretted.

Patricia Duffy Barber, Vice-chairperson

Adult PWCF branch, joined CFI board approx. 2012. Speech and Language Therapist for HSE

“I got involved with CFI as I have CF myself. I became involved with the Adult CF group in my late teens, it was a great way to meet other people my age who just 'got it'; who knew what it was like and had been in hospital and knew how I was feeling.

I have enjoyed seeing the association evolve from CFAI to CFI, during that time I've loved the social aspect of meeting people and been privileged to represent the members in meeting many Ministers for Health and An t-Uachtarán Michael D Higgins.

The dedication and enthusiasm of branches fundraising annually has amazed me.

I've been so encouraged to see the result of advocacy for better services, more staff and better treatment including the new drugs which have amazing potential for both us oldies in our 40s and our youngest members!

John Coleman, Treasurer

Eastern Branch, joined board in 2005 Tax Consultant

“Firstly I am a parent of a young Adult with CF. As a Fellow of the Chartered Certified Association of Accountants, Registered Auditor and Associate of the Institute of Taxation, I feel that my financial experience and reputation would be of value to CFI.

I believe in strong corporate governance and developing a forward thinking Association, remembering the past struggles and achievements.

I believe each member's views should always be heard and that each board member should strive to make the Association the best it can be.

Mary Mc Carroll, Secretary

Eastern Branch, joined 1980’s Homemaker

“I became involved with CFI as my daughter and son both have CF.

My highlights include representing CFI at the European Conference in The Hague in the 1990s, where I first heard about neonatal screening and Eastern branch hosting our 50th Anniversary.

It was particularly monumental to see the first person with CF become CFI Chairperson too.

Cyril Gillen

Drogheda Branch, joined approx. 2005 Retired secondary school teacher

I have a son with CF. I joined to get help and support and to be a tiny part of getting the help and support to others.

I have gotten more from the organisation than I ever contributed.

I find the people involved to be inspirational. I had the honour of being chairman of "the best little branch in the country" when we opened the Paddy Kieran's CF Clinic in Drogheda - a tribute to Paddy and so many others.”

Marion Barrett

Southern Branch, joined CFI 20+ years ago Homemaker

I got involved with CFI as my daughter was born with CF and I wanted to get involved to improve facilities for all CF patients.

An absolute highlight has been the introduction and success of the new drug Kaftrio.

Brendan Lonergan

Adult PWCF branch, joined CFI board approx. 2007 Early Years Practitioner/Educator

I am a 39 year old PWCF, and my good friend Nathan Swan (a fellow PWCF, sadly no longer with us) many years ago talked me into joining him by getting involved in the organisation. I have enjoyed seeing the amazing and positive changes that have occurred over the years due to the hard work of so many amazing and dedicated people: PWCF, members, volunteers, the incredible staff and my fellow Executive Board members.

I look forward to hopefully seeing even more positivity in the coming years.

Catriona Hayes

Tipperary Branch, joined 2005 Retired Army Officer

I’m the Mother of a young adult with CF.

I joined CF Ireland to help make a change to the lives of PWCF in the mid-west region.

The highlights include being a founding member of TLC4CF and the opening of the new adult CF unit at UHL in 2016. The unit was the result of the tremendous hard work of all the people in Tipperary, Limerick and Clare.”

Tess Brady

Cavan Branch Homemaker

I got involved years ago as a neighbour’s child had CF and I helped with fundraising. But since then the first of 2 grandchildren with CF were born 21 years and 13 years ago. I have seen many changes over the years in treatments and therapies.

The highlight has been meeting so many people, parents, staff at Head Office and attending conferences!

Claire Merrigan

Wexford Branch, joined 2019 Full-time carer / Camogie Manager and player

“I have a son with CF and have always loved being involved in CF Ireland. They are so supportive and we love to try fundraise and help and support other families.

I have also been very lucky in that I am an Ambassador for CF Ireland. The Mini Marathon was our first ever event and since then we have skydived, organised Wedding Dress Balls, held White Collar Boxing Events and taken part in so many other wonderful events throughout the years.

It's an absolute pleasure to be part of the Board of CF Ireland.

Iris Murphy

Sligo Branch, joined 2010 Sports Injury Therapist & Farmer

Almost 22 years ago my daughter Shania was diagnosed with cystic fibrosis as a baby. I

t has been wonderful seeing my daughter grow up overcoming daily obstacles with her health and well-being.

Being involved with CFI has given me a front row seat to all the advances made in this country in relation to Cystic Fibrosis such as newborn screening and new drug therapies as they become available for people with CF.

Billy O'Toole

Mayo Branch, joined CFI in 2017 Sales Executive

I have CF and was transplanted in 2010. I want to give back and help in any way I can. Giving a patient's point of view can help make decisions.

I really enjoy the team ethic in CFI and how nothing is ever too big of a problem.

Getting the recognition from President Michael D. Higgins was a proud moment.

Kieran McCarthy

Clare Branch, joined in 2016 Purchasing Manager

My daughter Aoibheann is a PWCF. My wife and I joined our local branch to help make sure her needs and the needs of all PWCF were fully understood and met both at a local and national level.

The past few years has seen so many advances in CF care, from a medical point and infrastructure being put in place.

My highlights would be CF Ireland's involvement in the campaign to gain access to Orkambi and the opening of the adult CF unit in UHL.

Denise O'Brien

Eastern Branch, joined 1990’s Special Needs Assistant

“I am the mother of two children Céire and Séan who sadly passed away from CF.

I wanted to help other people in similar situations and raise awareness and improve conditions and especially living standards for people with CF.

It was such a highlight when the Kalydeco / Orkambi drugs became available and most recently the Kaftrio drug. Also climbing the Julien Alps in lovely Slovenia as part of the fundraising walk.

Mary Lane Heneghan

Galway Branch, joined approx. 2005 Retired Teacher

“ have been involved with the world of CF since my son was born in the Royal Victoria Hospital Belfast in 1984. The family returned to Galway two years later and I became active in the Galway Branch since 1986. I'm the current chairperson.

I have met some amazing people in the world of CF.

PWCF and their families and dedicated teams in hospitals. I was honoured to be National Chairperson in 2008/9.

I have seen great positive changes from finding the missing gene in 1989 to the opening of dedicated CF Units across the country including the Transplant Unit in the Mater; improvement in care and treatment and the welcome recent CFTR modulator therapies.

Marie Duffy

Dublin West Branch, joined 2019 Business Owner

My daughter Grace was diagnosed with Cystic Fibrosis in 2011 at only 2 weeks of age.

Shortly after her diagnosis I attended the CFI conference and was inspired by all the families that fundraised and devoted their time and energy into helping families with Cystic Fibrosis and I knew that I wanted to be part of that community.

I also set up the Dublin West Branch with a couple of other CF Mums and it's been growing from strength to strength. Highlights include being part of a wonderful team on the CF board - meeting like-minded parents who know exactly what we go through and having that support. The Dublin West branch has raised a lot of money through its annual balls, local running challenges, etc. which is very rewarding and it's been a lot of fun along the way.

I was involved with setting up the private group and am one of the admins to "CF Mammies" on Facebook - where only Mammies living in Ireland can join this group - this has been an amazing (non-judgemental) support to all our members and I know all the Mammies find it a wealth of knowledge.