Changing Our Place in Space: Raising awareness for Organ Donation and supporting those with Pulmonary Fibrosis

Grainne Doran is raising money for Pulmonary Fibrosis NI
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Our Place In Space - 30 days · 24 February 2023

CARING-SHARING-SUPPORTING Patients and Carers in Northern Ireland; Pulmonary Fibrosis is a terminal condition and Idiopathic Pulmonary Fibrosis has no known cause or cure. We at The Northern Trust Pulmonary Fibrosis Support Group (NTPFSG) are here to provide support to sufferers of pulmonary fibrosis and their families from all across Northern Ireland; working to improve their quality of life. We provide practical support with day to day living. We help raise awareness and support research into improved outcomes and greater understanding of pulmonary fibrosis. We also provide a supportive place to come together to chat and socialise with a community that understands what it is like to live with pulmonary fibrosis. We have Ambassadors all across Northern Ireland who link with and assist their local pulmonary fibrosis community. We are a not for profit charity who have appointed Directors who give up their time freely and work collectively for the betterment of all pulmonary sufferers in Northern Ireland. Our President is Dr Eoin Murtagh (Respiratory Consultant) Antrim Area Hospital) and our Patron is Mrs Julie Hesmondhalgh The NTPFSG is involved with our politicians on the all party working group for lung health in Northern Ireland. We have contact with our Respiratory medical teams across the Health and Social Care Trusts to ensure that they are aware of the services we provide to sufferers and their families. If you feel we could help you then please contact us.

Story

I am going to cycle 'Our Place in Space' every day for 30 days in Memory of my late Uncle John who sadly lost his battle with Pulmonary Fibrosis before he could be listed for a lung transplant,

'Our Place in Space' is an installation representing the solar system which will stretch 11.8km along the North Down Coastal Path between 24th Feburary and 26th March 2023

As a respiratory Doctor this is a cause very close to my heart as it not only has affected my family personally but continues to affect many of the patients that I look after.

Idiopathic Pulmonary Fibrosis (IPF) is a form of Intersistial lung disease which causes scarring of the lungs. It is a chronic progressive disease which is ultimateley terminal. Most people will only live 3-5 years after their diagnosis. IPF is now one of the commonest reason for lung transplant. However the median waiting time for a lung transplant in the UK in 2022 was 422days and as the demand for transplantation vastly exceeds the availability of donor organs many patients die before they get the chance of a transplant. Sadly for John his disease was very aggressive and he died within 3 years of his diagnosis.

Whilst We Couldn't change Johns 'Place in Space' I hope this cycle will raise awareness regarding the delay in passing the OPT OUT organ donation law in Northern Ireland and also raise funds for the Northern Trust Pulmonary Fibrosis Support Group who provide support to patients and carers all around Northern Ireland.

Donation summary

Total
£6,040.00
+ £1,285.14 Gift Aid
Online
£6,040.00
Offline
£0.00

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