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ILD Roundup: What you have helped us achieve in 2019

Breathing Matters was established 8 years ago with the aim of finding better treatments for interstitial lung diseases (ILD) and lung infections. Since that time, we have raised money and awareness into these often neglected conditions. Looking back over the 8 years, we have come much further than any of us would have anticipated in the beginning. We have established new theories on the development of ILD or lung fibrosis and the role of the immune system in particular the clotting cascade and neutrophils. We also have better ways of monitoring and diagnosing these conditions and our novel nuclear medicine imaging programme and relatively non-invasive lung biopsy service are the first in the UK. We could not have achieved any of this without the support of our funders and our patients, so thank you all. This review highlights our achievements to date and our future directions in ILD.

Relatively Non-Invasive Lung Cryobiopsy (2014-ongoing):

Objective: To find a less invasive and better diagnostic tool for every patient with ILD

Main benefactors:     Teresa Timberlake and family – equipment purchase + Lawrence Matz Memorial Fund – Clinical Fellow                

Breathing Matters investment: £52,000 salary; £36,000 (total £88,000)

Leveraged funding: £347,000

Outcomes:

1.      Novel cryobiopsy service, first in the UK including training other centres; presentations at European Respiratory Society (2015), British Thoracic Society (2014-6); publications: review 2016; papers in preparation:

2.      Completed Lung-INHALE study Study (2019) to assess inhaled drug deposition using CLB.  This will allow drug companies to develop inhaled therapies for IPF and be sure that they are reaching the part of the lung where they are needed. The use of inhaled therapy will avoid some of the side-effects of anti-fibrotic drugs that are taken as tablets.

This project was developed in discussion with a family whose mother had had a surgical lung biopsy towards the end of her life. Her experience was such that her family felt that a less invasive alternative must be available. Dr Theresia Mikolasch, the Lawrence Matz Clinical Fellow, took this on for Breathing Matters to find out about and train in new techniques. Dr Mikolasch then returned to UCLH and established the first and only UK cryoscopic lung biopsy (CLB) service. CLB is a new way of obtaining larger lung biopsies using a flexible bronchoscope passed into the lungs through the mouth. The patient is sedated and surgery is avoided. This is not only better for the patient than a surgical lung biopsy, but also provides a solution to the lack of biopsy samples available for scientific research.  GSK were so excited by the technique that they awarded Dr Mikolasch and Dr Porter a grant of over £300,000 to carry on the service for an additional 3 years.

Novel FDG-PET Imaging to Predict Prognosis and Response to Treatment in ILD (2014-ongoing):

Objective: To find a new test (biomarker) that will enable us to predict prognosis and response to treatment in each individual patient.

Breathing Matters investment: £34,766

Leveraged funding: £173,850

Funding from BLF for clinical trial of FDG-PET in post transplant bronchiolitis £40,000

Outcomes: Novel FDG-PET imaging programme in ILD – first in the UK; presentations at American Nuclear Medicine Society (2015), British Thoracic Society (2015-6); American Thoracic Society (2017)

Publications:

Pulmonary 18F-FDG uptake helps refine current risk stratification in idiopathic pulmonary fibrosis (IPF). Win T, Screaton NJ, Porter JC, Ganeshan B, Maher TM, Fraioli F, Endozo R, Shortman RI, Hurrell L, Holman BF, Thielemans K, Rashidnasab A, Hutton BF, Lukey PT, Flynn A, Ell PJ, Groves AM.  Eur J Nucl Med Mol Imaging. 2018 May;45(5):806-815. doi: 10.1007/s00259-017-3917-8. Epub 2018 Jan 16.

Synergistic application of pulmonary 18F-FDG PET/HRCT and computer-based CT analysis with conventional severity measures to refine current risk stratification in idiopathic pulmonary fibrosis (IPF).

Fraioli F, Lyasheva M, Porter JC, Bomanji J, Shortman RI, Endozo R, Wan S, Bertoletti L, Machado M, Ganeshan B, Win T, GroveEur J Nucl Med Mol Imaging. 2019 Sep;46(10):2023-2031s AM.

Next steps:

1.      FDG-PET will be used as a response biomarker to see if we can detect which patients benefit from anti-fibrotic therapy and which patients do not benefit. We are applying to the NIHR for a £400,000 grant to carry out this study:

2.      We and others have shown that patients with IPF are more prone to blood clots. We have some very exciting work looking at anticoagulation in IPF.  We have completed 2/3rds of the study and will then publish our findings later in 2020 (see below).

Interstitial lung disease (ILD) consists of a heterogeneous group of diseases with varying amounts of interstitial inflammation and fibrosis. Survival in the most severe form of lung fibrosis, idiopathic pulmonary fibrosis or IPF, is particularly poor; however, there is heterogeneity in outcome. Some patients gradually deteriorate; some undergo stepwise progression, whilst others decline rapidly. Moreover, much of the prognostic data heralds from an era when the criteria for diagnosing IPF were less well and differently defined than at present.  There is a definite need to find prognostic biomarkers to predict outcome in IPF patients

Positron emission tomography (PET) offers the ability to non-invasively investigate cellular metabolism in vivo. PET studies in animals have yielded valuable insights into the biology of IPF and ILD and there is potentially encouraging evidence that PET may aid the development of therapeutic interventions to treat these debilitating conditions. It has been recently demonstrated that 18F-Fluorodeoxyglucose (18F-FDG) PET signal is consistently raised and can be objectively measured in patients with IPF. Moreover, these PET signals are shown to be stable and reproducible.

We have shown over several years and imaging hundreds of patients with ILD that the baseline measures of pulmonary 18F-FDG PET signal to predict survival in patients with IPF compared to other more established prognostic data.  We have also shown that combing PET data with our clinical scoring system based on gender, age and physiology (GAP) data (“PET modified GAP score”) refined the ability to predict mortality.

Future studies are to investigate the role of FDG-PET scanning in other ILDs, such as Rheumatoid arthritis (see below) and systemic sclerosis.

Rheumatoid Arthritis (RA) Associated ILD (2018-ongoing):

Objective: To discover why 1:5 patients with RA will develop lung fibrosis and what novel treatment can prevent disease progression.

Breathing Matters investment: £34,766

Leveraged funding:  £102,766

Outcomes: Novel biomarker test for neutrophils extracellular traps (NETS) in ILD in discussion with UCL business for further development; presentations at American College of Rheumatology (2014-6); British Thoracic Society (2016); British Rheumatology Society (2014-6);

Publications:

The lung in a cohort of rheumatoid arthritis patients-an overview of different types of involvement and treatment. Duarte AC, Porter JC, Leandro MJ. Rheumatology (Oxford). 2019 Nov 1;58(11):2031-2038. doi: 10.1093/rheumatology/kez177.

Autoimmune rheumatic disease IgG has differential effects upon neutrophil integrin activation that is modulated by the endothelium. Khawaja AA, Pericleous C, Ripoll VM, Porter JC, Giles IP. Sci Rep. 2019 Feb 4;9(1):1283. doi: 10.1038/s41598-018-37852-5.

Next steps: To work with a group in Cold Spring Harbour, USA to see if inhibiting NET formation prevents fibrosis.  To see if the presence of NETs in the blood can predict whether patients will develop lung fibrosis.

RA is a chronic debilitating disease estimated to afflict 13% of the world population. Around 10% of patients with RA will develop an ILD that is very similar to the lung fibrosis that we see with IPF. Dr Akif Khawaja was funded by Rosetrees and UCL to carry out a PhD into the aetiology of RA-ILD. His work proposed that RA is a disease that starts in the lung. That chronic lung damage caused by smoking, infection and other insults causes the immune response to recognize the lungs and joints as “foreign” and attack them causing chronic damage. His work implicated neutrophils in this process and, in particular, the p38 MAPkinase pathway.  We are hoping to develop a new test using blood or sputum to detect early activation of neutrophils in the lungs of patients at risk of ILD.  This same test may act as a biomarker for prognosis and to detect early response to novel therapies.  

A Trial of Anticoagulation in IPF (2016-2020):

Objective: To assess the potential of anticoagulation as a treatment for IPF

Main benefactors: The Hulme Family – The Mark Hulme Clinical Fellow

Breathing Matters investment: £40,000

Leveraged funding:  £100,000 from UCL/H NIHR BRC

Next steps: A trial of anticoagulation with heparin in IPF using FDG-PET as a response biomarker

At present, we do not know the exact cause of idiopathic pulmonary fibrosis (IPF), although research has identified lots of processes that are likely to be involved. Currently, we believe that microscopic injury occurs in patients with IPF and then the body responds to repair this, but does so in a way that leads to more damage and scarring. One of the processes involved in repair pathway is coagulation, which minimises blood loss when tissues are damaged.  Patients with IPF are at increased risk of blood clots and this can reduce their already low life expectancy. We also think that these blood clots drive the worsening of their lung disease. Researchers have shown that clotting is over-activated in the lungs of IPF patients and we want to investigate how reducing this might improve the disease.  Based on work carried out at UCL, we believe that anticoagulation with heparin is safe and may even prevent disease progression in IPF. Patients will be asked if they would be willing to take the oral anticoagulant dabigitran for 3 weeks, to reduce clotting. We will perform blood tests and FDG-PET scans before and after taking the drug to judge response.  If we find that the heparin is safe and the patients report some improvement that we can confirm with questionnaires lung function and FDG-PET scans, then we will progress to leverage funding for a much bigger trial.  We have completed 2/3rds of this study and have analysed the results. We have found a small effect and the suggestion is that we look in a few more patients that we will recruit early in the New Year.

A Trial of a Novel Treatment (Compound X) in IPF (2019-2022):

Objective: To assess the potential of Compound X as a treatment for IPF

Main benefactors: NIHR BRC £100,000

Breathing Matters investment: £40,000

Leveraged funding:  Application to British Thoracic Society, Wellcome Trust and NIHE.

Next steps: A trial of Compound X in patients with IPF

Assessing effectiveness of treatments for IPF is difficult as often they do not make patients feel better, despite decelerating disease. Currently, we are guided by regular breathing tests and special imaging of the lungs, which are insensitive to changes and may be unpleasant for patients. We need better tests like a simple blood test to predict the prognosis for individual patients, and their responses to treatment. Causes of IPF are unknown, but we have found that specific white blood cells, called neutrophils, are increased in the lungs of patients with IPF. We also found that the more neutrophils in the lungs, the faster the decline from IPF. This suggests that neutrophils are actively worsening IPF. Neutrophils produce a substance called X that we detect in the bloodstream of patients with IPF. No-one has investigated whether X causes or worsens IPF. We plan to quantify X in the blood and lungs of patients with IPF. By comparing X levels in patients with IPF against healthy individuals, this will establish whether X is increased in patients, whether high levels of X indicate more severe IPF and whether treatment for IPF reduces X levels in patients that respond. These results will ultimately help design future clinical trials testing Compound X that is able to block X as a treatment for IPF.

Understanding Mucin 5 B and Its Role in IPF (2019-2022):

Objective: To assess the role of Muc5B in IPF

Main benefactors: NIHR £300,000

Breathing Matters investment: £40,000

Next steps: Further investigations in patients with IPF of the effects of blocking neutrophil activation

Publications: A review on mucins in lung disease has been submitted and we hope this will be published in 2020.

It is unclear what causes IPF, but it is thought to be a response to damage to the lining of the airways (epithelium) following an unidentified injury. This results in the

formation of excessive scar tissue which disrupts the delicate architecture of the lung and ultimately death follows from respiratory failure.  We have shown from research previously sponsored by The Rosetrees Trust that a certain type of white blood cell which is specialised in fighting infections called neutrophils may play a role in PF. We have found that neutrophils are increased in the blood and lungs of patients with PF and the more neutrophils you have, the worse the individual’s outcome.  In addition, it is recognised that you are more likely to develop IPF if you have a commonly occurring genetic mutation that causes increased mucus production by the lung epithelium, and in particular a protein called Mucin or MUC5B that gives sputum its stringy quality. We propose that the overproduction of MUC5B may stress the epithelium, making it more prone to damage and scarring. In addition, the increased MUC5B will attract and activate neutrophils from the blood and these white blood cells can cause further damage. We hope that, by identifying treatments that limit the number of neutrophils moving into the lung, we can protect patients from developing PF or from PF progressing. We will use neutrophils and epithelial samples form patients and healthy volunteers to compare differences and see how the MUC5B affects neutrophil activation in the lung. Lastly, we plan to block neutrophil activation and recruitment with a specific treatment that is already being developed for other indications and has an excellent safety profile. If our results are encouraging, we can take this medication into an early clinical trial for patients with IPF.

We have also shown that we can detect very early changes in the CT scans of patients that make too much Muc5B and this might be a very early sign, even before the scan looks abnormal, that these patients are at risk of lung disease.

If you are a UCLH patient and want to get involved in any of the above studies, please discuss this with your consultant.

2017 Roundup – What You Helped Us Achieve

We would like to thank to you all for your loyal support over the last year and for giving so much of your time and funds.  Since our launch in January 2011, you have helped us raise £500K – without you, this simply would not have been possible.  We thank you!

So, what have we done with all your raised funds?  We have spent this wisely and here are a few important areas of research where your money has been focussed in 2017:

  • We recruited a fabulous clinician, Dr Helen Garthwaite, to be our Mark Hulme Clinical Fellow. Helen has pioneered the use of anticoagulation in IPF and has established the first clinical trial of directly acting antithrombin agent, dabigatran, in IPF. We have now started recruiting to this study and the first two patients have completed the trial. We hope that the results will be available shortly and may provide the impetus for a much larger study.
  • We held a patient and public event for IPF.  There were presentations on our research projects including our work on rheumatoid arthritis associated ILD, platelet and clotting in IPF, genetics of IPF and novel imaging in IPF.  We also met with old and new friends and established our research priorities for 2018.  We plan a much larger study of anticoagulation in IPF.
  • We completed our PET scan in IPF study which has been accepted for publication. This showed that PET scans are able to help us more accurately define the prognosis in patients with IPF.  A big thank you to the 112 patients with IPF that have given up their time for scanning over the last 5 years.
  • We published three papers on bronchiectasis which show that, although bronchiectasis is a pure lung disease, the ill-health it causes results in patients having a higher risk of diseases affecting the blood vessels in the heart and brain.

Leveraged funding: Importantly, the money that has been raised for Breathing Matters has allowed us to carry out some early seed projects. The results of these early studies have then allowed us to leverage an additional two million pounds from other sources including the Medical Research Council, The British Lung Foundation, The National Institute for Health Research and the Biomedical Research Centre since 2012.  This means that, for every pound contributed to Breathing Matters, we have leveraged another £4 that will all be put towards finding better treatments for patients.

It was lovely to see so many of you at our #Breathtember Patient/Supporter Pulmonary Fibrosis/Interstitial Lung Disease Focus Group in September and our Patient/Supporter Bronchiectasis Meeting in October. At the ILD event, Dr Porter along with our fabulous clinical fellows and scientists presented their integral and very interesting research work into PF and ILD. The ILD focus group discussed future areas of research into these conditions. The scientists loved meeting everyone at the ILD Meeting and one scientist said that meeting you helped ‘motivate us to do more and do it better and quicker’. At the Bronchiectasis Evening, Professor Brown explained what we know about bronchiectasis and what we still need to find out; and, importantly, how Breathing Matters can help. This was followed by a lively Q+A session when Professor Brown answered some in-depth questions on the treatment of the disease.

We have had two successful fundraising events in 2017, Cyclotopia and our Christmas Concert.

  • Cyclotopia is a bike fest of FUN events at the Lee Valley Olympic VeloPark from road cycling, mountain trail and track cycling.  It’s for all ages and experience. This year’s event is on Sunday, 20th May 2018 – mark it in your diary now.  Click here for news from last year’s Cyclotopia.
  • Our Christmas Concert is held in the iconic St Paul’s Actors Church in Covent Garden, which in itself is worth a visit. We are entertained by the renowned and internationally acclaimed Holst Singers and we also have celebrity readers. It is a fantastic way to start off the festive season  Watch out for next December’s date.  Click here for a roundup of last year’s concert.

If you haven’t attended these events yet, please consider coming along during 2018.  We are proud of these bespoke events; and, as they are so different, they should appeal to all of you!

Awareness is continuing to increase.  People are starting to notice pulmonary fibrosis and lung infection / bronchiectasis.  Let’s continue the good work.  Our supporters on the website, facebook and twitter have now increased to a potential 4000 supporters.  We need as many supporters as possible to help raise awareness of pulmonary fibrosis and lung infection, so asking your family and friends to like/follow us will help, and more retweeting too.  You might like to put our newsletters, leaflets, stickers or windmills on posterboards around your local area – we are always happy to provide these for you. Perhaps you could wear our stylish pin badges – email us to purchase these. Stories in the media are a fantastic way of raising awareness for Breathing Matters, and thank you so much to those of you who have managed to get your stories on radio and newspapers during the last year.

All of us from Breathing Matters hope you have a Happy and Healthy New Year !

 

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Thank You For Your Fundraising During 2016

We are truly indebted to all our fabulous supporters; we exist because of you!  Here are some of the amazing fundraising events you organised and helped with last year:

Cyclotopia Charity Cycle Event, Lee Valley Velodrome 12.6.16

Christmas Concert, St Paul’s Church, Covent Garden 9.12.16

Breathing Matters Charity Stalls x 6

  • Tough Mudder
  • London Marathon
  • Bundles of bike rides, including the Croydon to Torquay Cycle
  • Coast to Coast Walk
  • Ironman Austria
  • Yorkshire 3 Peaks
  • Skydives
  • Brighton Marathon
  • Bristol Half Marathon
  • Prudential 100
  • Zumbathon
  • Great North Run
  • Cyprus Half Marathon
  • Swim Serpentine
  • London 10K
  • Marlow River Swim
  • Jersey Triathlon
  • Grim Reaper Ultra Marathon
  • Birthday party donations
  • Great Birmingham 10K
  • Panto … oh yes we did!

PLUS MANY MANY MORE!!!!

 

 

 

 

#Breathtember … Let’s Make a Difference Together!

Thank you to all of our supporters who got together to Get Out Of Breath for #Breathtember last month to help raise awareness of pulmonary fibrosis during September’s global PF awareness month.

colt-team-marseille-to-barcelona-2016liz-wiacek_swim-serpentine_25-9-16From cycling across the Pyrenees to a push-up challenge, from swimming the Serpentine to a sponsored trampoline jump session.  You all did your best to spread the word about pulmonary fibrosis.

And why did we do this … here’s why:

  • Men are nearly twice as likely as women to suffer from IPF.
  • There are 5000 new cases of IPF every year in the UK.
  • 50% of IPF sufferers die within 3 years of diagnosis.
  • More than 30,000 people will be diagnosed with IPF in the 27 EU countries each year. 
  • IPF is more common than all leukaemias conbined. 
  • Most patients are diagnosed 1-12 years after their first symptoms. 
  • 5 million people worldwide have IPF. 

We need more funding to change these statistics.

Thank you for your help during #Breathtember … let’s make a difference together!

Wales Breathes Easier

Mandy Sterling and Theresia Mikolash in WalesThank you so much to Mandy Stirling who raised over £1000 for Breathing Matters at her 40th birthday instead of receiving presents to celebrate her new decade. This was in honour of her lovely goddaughter, Belle, who has a rare lung disease.

The cheque was presented to Dr Theresia Mikolash from Breathing Matters.

Mandy reported to the Western Telegraph: “The hotel will continue to raise money over the coming years in the hope that better treatment or a cure can be found so that Belle, as well as others, can live out a normal life and not be dependent on medication.”

Thanks to Mandy and all her party guests.

Read the report from the Western Telegraph:

David Longman: A Massive Loss

David Longman photoIt is with great sadness that I report David Longman’s death earlier this year on 19th March 2015. After having established successful careers in journalism and advertising, David gave up his job and sold his house with the sole purpose of promoting photodynamic therapy (PDT) as a cancer treatment. He was inspired to do this after witnessing how effective PDT was at treating a tumour affecting a member of his own family.

He set up the charity “Killing Cancer” in 2006 and built close ties with UCH where PDT is being developed for cancers affecting the lungs and other organs. He campaigned tirelessly and passionately, but obviously became very frustrated at the slow pace of change in medicine, often giving the impression that he would prefer to knock the door down rather than look for the keys!

He leaves me with many happy memories of research meetings, media interviews, introducing patients to Prince Charles, and even fundraising days spent fishing on Roger Daltrey’s lake in Sussex.

His untimely and unexpected death is a cause for much personal sadness but, more importantly, a great loss to medicine and a terrible blow for his family.

Obituary kindly written by Dr Jeremy George

 

 

 

 

A Trek for my Grandmother, By Harpreet Dhatt

On Christmas Eve 2013, pulmonary fibrosis took away the most important person in my life. My grandmother, Surjit Kaur, was my best friend; she gave me unconditional love and support. She was an incredibly loving and kind woman. Every moment of my life has a memory of her, and it’s incomprehensible that she won’t be a part of my future. There is not a day that goes by where my heart doesn’t ache for one last hug. Every single second without her is just incredibly painful.

As part of a trip to South America this year, I have decided to trek the Inca Trail to Machu Picchu in memory of my dear grandmother.  I thought this would be a wonderful opportunity to raise money for a charity that is close to my heart. Breathing Matters is a charity that focuses its attention on various lung diseases and infections, but primarily Idiopathic pulmonary fibrosis. Pulmonary fibrosis is a very rare disease that causes scarring of the lung tissue and in many cases it is fatal as there is no cure. 

Breathing Matters is one of the few charities in the UK that actually funds clinical research at UCL. Their aim in the long run is to find a cure, but they also research ways to prevent the illness as well as making it liveable and manageable. 

If the money I raise can help others avoid the loss of a loved one, then the hellish trek will definitely be worth it. So if you have any spare change, please donate it to Breathing Matters in memory of Surjit Kaur to help those people out there who still have a chance – https://www.justgiving.com/Harpreet-Dhatt/

Thank you very much for taking the time to read this.

My Dad, by Chloe Ham

Clive Ham, my dad, was 56 when he was diagnosed with Idiopathic Pulmonary Fibrosis. We never imagined that within 4 years of being diagnosed my dad would lose his fight against this terrible, devastating disease.
 
Dad had always been very active and joined the police cadets at the age of 17. This involved dad taking part in sporting activities like abseiling, kayaking and mountain climbing which he loved to do. Dad was an outdoors person and loved his time as a cadet. From there, he then went on to work in the police force where he stayed for 43 years. Dad was an extremely hard worker and dedicated to his job, but he always found time for his family. Growing up, my brother and I were very fortunate to be taken to so many different places and experience so many different things. He was the person everyone looked up to, went to when we needed help and supported us in whatever life decided to throw at us. My dad was truly the greatest father, most devoted husband and kindest friend we could have ever wished for.
 
I could count on one hand the amount of times dad had been ill or needed to go to the doctors about something, but when he started to get a niggly cough that didn’t seem to be getting any better, dad decided to get it checked out. They referred him for breathing tests and chest x-rays and that was when we were told it was IPF. We’d never heard of IPF before so it came as a shock to all of us, but dad being dad reassured us and said it would all be fine. We knew they were going to be monitoring dad’s breathing so we weren’t too worried about it at the start. As time went on, dad had good days and bad days where the cough seemed to be unbearable for him. On days like these, he looked weak which was not like dad at all.
 
It was in February of this year, however, that dad’s spirits were lifted; during a routine check-up, we were told about a trial drug at UCLH which they were going to consider him for. We were pinning all our hopes on dad being accepted and he was due to go to UCLH to see Dr Porter at the end of April, a week after coming home from our holiday. Sadly, my dad passed away on Monday 7th April, a day into our holiday. He was taken too soon and we are devastated that he never got the opportunity to try this new drugs trial and have a chance of possibly feeling well again.
 
There was no doubt in our minds that the charity we are supporting is Breathing Matters. They do fantastic work into the research of IPF and let’s hope one day we can find a cure for this cruel disease. We are continuing our fundraising efforts and, in September, my friend Nicola is cycling from London to Paris for 4 gruelling days in memory of my dad and to help raise awareness of Idiopathic Pulmonary Fibrosis. Nicola’s fundraising page is http://www.justgiving.com/Nicola-Spray1, If you would like to support Nicola, we would be very grateful for your donation.
 
We love you and miss you so much, dad. You will always be in our thoughts and forever in our hearts. xxxxx

My Amazing Father, David John de Warrenne

We recently lost my Dad, David John de Warrenne, to an awful disease called Idiopathic Pulmonary Fibrosis, and pneumonia.

Dad was such a lovely and truly wonderful man loved by so many. I couldn’t have asked for a better father. He was also an extremely talented musician, winning top competitions throughout his life and dazzling many with his “spine tingling” performances. He studied with the famous Julius Katchen, the famous concert pianist in his Paris apartment overlooking the Eiffel Tower. Dad, and his fellow pupil and dear friend of over 50 years Anthony Green, at 19 years old were the first white people to perform in Bermuda, casting aside the racial segregation of the times; something they were both very proud of.

Following this, Dad worked hard all his life, teaching at Trinity School in Croydon for 40 years, arranging, accompanying and writing music for Trinity Boys Choir and the much coveted “DW” choir, the public face of Trinity Boys Choir.

Not only this, but along the way he helped his students and family, not just musically, but with everyday obstacles life threw at them. Especially me, as his son, I always confided in him whenever I needed to and always depended on him.

Dad always approached life in a positive way and never let his illness affect him. Unfortunately, Dad was diagnosed with IPF not long after his retirement which restricted his ability to carry out every day tasks. After many years teaching, it’s so sad that he never got a fair crack at retirement.

Idiopathic means “no reason for”, pulmonary “lung” and fibrosis “scarring” and thus has no explanation for its occurrence. But upon diagnosis, it’s life changing with extremely devastating statistics. Thus, research and testing needs to be continued and advanced and hence why the family and I have chosen “Breathing Matters” as the charity of choice to raise money in Dad’s name.

All donations in Dad’s name are welcome and greatly received http://www.justgiving.com/AdeW4DdeW. I will also be undertaking a challenge, yet to be decided, in Dad’s name in due course.

Sleep well my amazing father, love forever, Alex

My Amazing Father was written by Alex de Warrenne

 

A Tribute to Beryl Wakeman

Beryl Wakeman 12.04.1936 to 10.01.2014 

My Mom was diagnosed with bronchiectasis in July 2013, she had been ill for a long time, but was very strong willed.  In July, we borrowed an oxygen reader and realised her oxygen was only 73%; we went straight to A&E.  Within a couple of days, she was admitted into critical care, where she was placed on bipap.  They said they would give her 5 days of treatment, but the damage to her lungs were too far gone, we were told that she would probably die on the ward. 

Beryl had other ideas and pulled through.  She came home with home oxygen and was recommended for palliative care.  We had no assistance for 6 weeks, when she was readmitted again, this time only for a week.  She was the first patient in the area to get IV antibiotics at home with nurses calling twice a day to administer.  She was full of energy and back to life. 

We were then allocated a nurse “Rachel” which reassured Beryl and the family.  We had a great Christmas, but a few days later her oxygen levels began to drop.  We went back into A&E where we were told there was no need for critical care or the bipap machine.  We left her at 11pm on the ward and, when we went to visit her early the following morning, she was in critical care where she made progress for the first few days, then started to deline.  Her CO2 levels would not come down even with the bipap then we were told there was no more they could do for her.

She was transfered into a side room on a respiratory ward.  Beryl died peacefully in her sleep at 06.15 the following day surrounded by her family.

Throughout her illness, Beryl never once moaned and always had a smile.

She made us so proud, we love you and miss you.

Hiram, Andrew & Gordon Wakeman