Orla Tinsley: Transplant Fund

$97,170 of $50,000 goal

Raised by 1,690 people in 7 months
Created July 20, 2017
 Since her teenage years, Orla Tinsley has been a tireless campaigner for people with cystic fibrosis. Her journalism and activism drew much-needed national attention to the sub-standard level of care for adult patients in Ireland, and led to the creation of a dedicated CF unit at St Vincent's Hospital in Dublin.

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 helpI am so grateful to Belinda for being so supportive and taking the pressure off me at this time.

Thank you!
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Hi Everyone

Belinda here. By now you will probably all have heard the great news of Orla's double lung transplant, which happened on December 21st. She is recovering very well and has just moved from the ICU to the Transplant Ward, another sign of her progress. I wanted to share this wonderful photo in case anyone hadn't seen it on social media yesterday, New Year's Day. Here's to a great 2018 for Orla and for you all. And our thoughts are with the donor's family and indeed with the donor, whose generosity saved Orla's life.

Thanks once again, too, to all of you for your immense generosity. Please consider becoming an organ donor and discussing your wishes with your family. As Orla puts in in her inimitable style: Give Life, Be Life, #recycleyourself!

Belinda x
Orla in hospital yesterday, Jan 1 2018
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Hi everyone,

Belinda here. This is just a short note to ask you to hold Orla in your thoughts during these nights and days. As some of you will know from her social media updates, she is currently on life support in New York Presbyterian Hospital, where her team are working (in her words) around the clock to keep her alive. Previous transplant possibilities over the past weeks and months have not worked out for Orla (the lungs need to be exactly right for the recipient). She has been, and continues to be, incredibly strong, positive and generous in her spirit. She is waiting for her new lungs and believing that they will come. She has also, with her typical altruism, used her social media voice this evening to ask people to carry a donor card and let their families know of their wishes so that others may get the transplants they need. In Orla's words:

"Please carry a donor card and let your family know your wishes. Then you can live life and give life. Up to 8 people can be saved. I am currently on life support fighting intensely. Love x #beatcf #cysticfibrosis"

I know that you all will want to send positive thoughts Orla's way at this time. Thank you so, so much for the generosity you have shown her with your donations. The support has meant so much to her.

She's our Ninja and we need her in this world. Here's hoping.

Tuesday, 18 December
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Hi everyone,

I just wanted to post a personal update to thank you all so much for your support and love. I am still waiting for my double lung transplant but I have been lucky enough to have been called twice however the lungs were not right for me those times. This is something that can happen. I am hoping that third time is the charm.
Things are tougher now than they were when I began this journey but I believe good things are coming and that the right lungs will come along soon. I am working hard through exercise and treatments everyday to be ready.
Thank you for all of your messages, memories and support.
With love and deep gratitude,
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In just over a day, the generosity of donors and of those who've shared the campaign has allowed us to raise over 50% of our goal. Thank you SO much to everyone, and for your lovely messages for Orla, too - it's moving to see how much she means to people, and how many people are grateful to her for the work she's done for CF. I agree - she rocks.
Belinda x
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$97,170 of $50,000 goal

Raised by 1,690 people in 7 months
Created July 20, 2017
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