Nathalie Christina Soffe

(25/11/95 - 14/01/22)

Our beautiful girl lost her final battle in the early hours of 14th January 2022. She was our fighter right until the the end. Fighting Leukaemia when she was 8 years old, again at 12 years old, resulting in a Bone Marrow Transplant aged 13, and then being diagnosed with PPFE (pleuroparenchymal fibroelastosis) in 2019 - our girl always faced such a battle, and constantly took it in her stride. Showing us all bravery, determination & courage, whilst being kind, caring & positive throughout. She was truly remarkable.

Donations in Nathalie's memory are encouraged. She always wanted to be a part of research & helping others who are like her, as well as helping the medical teams grow & learn. We have recently come in contact with Dr Joseph Jacob at University College of London who researching into all areas of PPFE, including causes & potential treatments. We are asking for donations towards Breathing Matters at UCL to help aid Dr Joseph Jacob & his team and make a huge difference in those who are affected by PPFE.

"It was thought by many that pleuroparenchymal fibroelastosis is a part of IPF, but we are finding that, although it often co-exists with IPF, it also occurs on its own. It is a progressive scarring disease of the lung that is distinct from lung fibrosis. It occurs at the top of the lungs and no treatments have been shown to reduce the progression. Patients with IPF and PPFE do less well than IPF patients without PPFE. We aim to measure progression on CT scans and see if we can develop markers of progression, either from imaging or blood tests, which will help us determine what it is that drives this disease and establish if specific treatments, such as antifibrotics or anitbiotics, help to slow down disease progression.”

Breathing Matters mission is to raise awareness and inspire fundraising for vital research into pulmonary fibrosis and lung infection at UCLH and UCL Respiratory. Together, we can achieve anything! Visit www.breathingmatters.co.uk to find out more.

Our current Fundraisers include those running the events below:

• Brighton Half Marathon - 26th February 2023

• Brighton Full Marathon - 2nd April 2023

• Brighton 10k - 2nd April 2023