Throughout her own trials with CF, Orla has never stopped using her voice to advocate for her community. When she moved to New York in 2014 to study at Columbia University, she focused not only on her own writing, but on learning about treatment and care at Columbia's own CF center. Through her journalism and activism, she fought for people back in Ireland to be able to benefit from Orkambi, the drug which was making a huge difference to her own life. Writing in the Irish Times in 2015, Orla said that the story CF offered was now "no longer a curvature towards certain death by age 30. It's changing and being challenged and defied by people and technology fighting against it...Fighting is part of the lexicon of cystic fibrosis and illness. We are warriors from day one."
After years of helping others, Orla now needs our help. She would never put it this way herself, but as her friend and as a long-time admirer of her work, her spirit and her downright grit, I'm saying it. Having gone into respiratory failure last year, just before turning 30, Orla needs a double lung transplant and is on the active waiting list at Columbia New York Presbyterian Hospital. She can't fly back to Ireland; a flight like that would not be safe for her. She's on oxygen every day, but check her Instagram feed ; nothing stops her living her life and experiencing her adopted city in the fullest way she can.
Still, there's no way of sugar-coating this: Orla needs this transplant, it's obviously a very serious surgery, and while her health insurance will thankfully cover the transplant, there are aspects of care and recovery (including copays, mediation, transport, oxygen and much more) which are not covered by insurance. For the first year after a transplant, a patient remains at high risk for rejection, and there are many costs associated with monitoring and guarding against this, as well as with recuperation in other ways. After-care is crucial, and it's expensive. That's where we can help.
Orla's transplant team have advised that she should have a large contingency fund in place which can be put towards these costs. The sums are enormous, so I'm setting up this fundraising campaign to make a contribution; please give what you can and spread the word. Orla is an amazing woman. All donations will be transferred directly to Orla. If you have questions about this process or about the campaign, feel free to email me using the contact link on the campaign page.
(Note: some supporters have let me know that it's difficult to contribute if you don't have a postcode. Entering "000" or some variant should be a fix for this.)
Orla Tinsley is generous, inspirational, and completely in love with life in a manner which reminds the rest of us of the reasons why we might feel the same way. She's facing a very tough time ahead, and we can help to make it a little easier and less stressful.
Thank you for reading. Here's a brief note from Orla:
I am proud that I have been able to make a positive contribution with my life and hope I have been worthy of it. Living with CF is a challenge but living at all can be a challenge. I was lucky to have a mission and to know it from a very young age. Now I am older and my time is running out. Unless I get a life saving lung transplant I will die. I am too unwell to come home to Ireland for the surgery but I am lucky to have an amazing transplant team here. Transplant is about recovery and hard work afterward where I will have to rehabilitate and live with my new lungs. Hard work afterwards is what make the difference in survival. I need to stay close to the hospital for one year until I recover and work hard at rehabilitation and take on all the other challenges post transplant life bring. I am ready for this. I am ready for this new challenge and my warrior heart is open. But I need your help. I am so grateful to Belinda for being so supportive and taking the pressure off me at this time.
- Miriam Laird
- Geraldine McGinty
- Simon Flett
Organizer and beneficiary
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