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Top 10 Highlights in 10 Years

1: Involving You

We have had many opportunities to meet our supporters over the years from small personal meetings to large tours; both are very special to us – you are the lifeblood, or the lungs (!), of Breathing Matters.

Our launch event on 19th January 2011 seems like only yesterday.  Professor Geoffrey Laurent, the then Director of the Centre for Respiratory Centre, was joined by his team of scientists and researchers as well as respiratory doctors.  It was attended by over 100 patients and relatives.  Speakers included Jo Porter, Malcolm Weallans and Manjiry Tamhane who spoke about topics ranging from living with respiratory disease through to the importance of patient support in shaping future scientific research and ways you could directly help us.  Our scientists were inspired by meeting our supporters and the patients whom their work helps.

Since then, you have attended our research meetings, events and our patient supporter meetings; you have helped us steer the way forward and shaped our research; you have advised on our fundraising and awareness strategies, you have attended our centre tours to see our labs and talk to our researchers about our work, and you have helped celebrate our achievements.

2: The First UK Treatments for IPF

In 2014, UCLH became an NHS-England Specialist Centre for the diagnosis and management of Interstitial Lung Disease.  This was important and timely as it enabled our doctors to prescribe idiopathic pulmonary fibrosis patients with Pirfenidone and Nintedanib – the first treatments in the UK available to IPF patients. These antifibrotic therapies slow decline in lung function and reduce the risk of acute respiratory deteriorations.

This was a game-changer.

3: Funding Clinical Fellows and Their Research

Breathing Matters has funded three celebrated Clinical Fellows:

  1. Lawrence Matz Clinical Fellow – Dr Theresia Mikolasch, who set up our Cryoscope Service and was the original soldier in our Neutrophil Army.
  2. Mark Hulme Clinical Fellow – Dr Helen Garthwaite, who worked on our important PET response studies.
  3. Christopher Whittington Clinical Fellow – Dr Emma Denneny, who is currently working on novel biomarkers to detect lung fibrosis with a blood test, earlier than standard CT imaging.

The work that our Clinical Fellows have done has enabled us to leverage a further £450,000 in grants.

4: Pioneering Diagnostics – Cryoscope

Our Lawrence Matz Clinical Fellow set up the Cryoscopic Lung Biopsy Service at UCLH, a pioneering minimally invasive diagnostic technique.  The cryoscope was part-funded by Breathing Matters.  In February 2013, UCLH diagnosed idiopathic pulmonary fibrosis from a cryoscopic lung biopsy – this was a UK first.

This was important for:

  • The Patient: who undergoes a day case procedure as opposed to a surgical lung biopsy, thereby avoiding hospital admission, an unsightly and painful scar and a chest drain.
  • The histopathologist: who said the quality of the tissue and preservation were excellent and much better than other minimally invasive biopsies due to the freezing during the procedure.
  • Our ILD research programme: We now have access to lung tissue that is removed, but is excess to that needed for clinical diagnosis.

5: Predicting and Detecting Pulmonary Fibrosis

A lot of our research is looking at better ways to detect pulmonary fibrosis even whilst the lung CT scan is normal. Our ultimate aim is to make an early diagnosis of PF with a blood test. Until then, we are looking at using very very sensitive imaging techniques, such as PET scans and MRI, to detect early changes in radiologically normal lung on CT scans. We have found that we can predict how severe PF is and how quickly it will progress from these PET scans and they may even help us guide treatment. Another exciting area is radiogenomics in which we use imaging patterns to understand the role of genes that predispose individuals to developing IPF.

6: Breakthroughs in Lung Infection

Through work partly done at UCL/H, bronchiectasis was proven to be more prevalent in the UK than previously thought – leading to better GP awareness, diagnosis and treatment.

We highlighted that bronchiectasis in those with weakened immune systems due to haematological disease develops very quickly; better awareness will make doctors much better at recognizing these patients and referring them to specialist centres, such as UCLH.

Our other work uses computers and CT scans to measure the exact degree of the dilatation of the bronchi in patients with bronchiectasis.  This is a significant breakthrough as it will allow us to follow what happens to a particular patient over time, and rapidly identify if things are getting worse.

The Bronch UK national study was the first study funded by the Medical Research Council into bronchiectasis for many years. The aim of the study was to look into the spectrum of disease caused by bronchiectasis, how severe the disease is and how it actually affects the patients’ quality of life.  Thank you to our 150 recruits!

Breathing Matters has supported the important PHOSP-COVID Urgent Public Health study looking into the long term effects of the COVID-19 virus which causes lung infection.

7: Spreading the Word

Where would the medical world be without scientists and researchers?  How would they get new treatments for their patients?  How would GPs find out about new or little known diseases and know when and how to act quickly?

Breathing Matters has reached out and spread awareness through various ways over the last 10 years.  Each September, we highlight global pulmonary fibrosis awareness month through our #Breathtember campaigns, we communicate regularly with you via our website, newsletters and social media, we have held awareness stalls in our hospital [world pneumonia day, #Breathtember, organ transplant month, bronchiectasis charity stalls] and at local institutions, including Sainsbury’s where we were Local Charity of the Year.  We even advised on the IPF storyline on Coronation Street in 2019.

8: FUNdraising and FUNdraisers

Breathing Matters has had some amazing and innovative fundraising challenges over the last 10 years.  We started our fundraising journey in 2011 with the first of our charity bike rides in Richmond Park.  After 4 years, we went bigger and moved to the Olympic Velodrome offering a myriad of biking challenges.  One of our star fundraisers, Jane Walker, with the help of many of our supporters, including the Holst Singers, has now raised £30K for bronchiectasis research through the Breathing Matters charity stalls and charity concerts-amazing!  Keeping ahead of the curve, our charity silent discos at the London Steam Museum were a big hit and 2020’s virtual fundraisers were challenging in a different but safe way. But our supporters have come up with some of the BEST ideas, including golf days, head shaves and hairdressing days, jewellery sales, bake sales, house clearance sales, swims/walks/runs/bike rides of all distances, motorbike challenges, spinathons, zumbathons, charity CD, concerts and recitals, going up mountains, falling from planes or bungying, books, boxing, dieting, giving up alcohol or smoking, charity beer, charity dinners, pancake events, husky sled trails and even a tractor run … among many many more!

9: Royal Visit

In 2016, UCL Respiratory was honoured when HRH Princess Anne paid us a visit.  The Princess Royal attended in her official capacity as Chancellor of UCL to officially open the refurbished labs.  During her visit, HRH met with the designers and architects along with our important researchers and scientists, and was treated to a tour of the labs.

The Breathing Matters team was introduced to the Princess Royal and it was a huge honour to have the opportunity to talk with her about the charity and what we’ve accomplished.  HRH asked us to “keep up the good work” and, with your help, we have done just that!

10: Your Support

You, our supporters, have helped us achieve so much.

With YOUR help, at 3 years, we had reached £250K; at 7 years, we had reached £500K; and at 9 years, we reached an incredible £750K – all because of you!

We have decided to keep our charity small so we have little overheads, enabling all your hard-earned fundraising and donations to be funnelled into our vital research.

 

If you would like to help us ‘keep up the good work’ and make a difference, you can do so via our Justgiving Page or email us on breathingmatters@ucl.ac.uk for our bank details.

 

 

Christmas with the Holst Singers

Very sadly, we are unable to be all together this December for our annual Christmas Concert at St Pancras Church, but to bring us all together at this special time of year, our friends in the Holst Singers have very kindly donated a recording of a small selection of carols for us.

The recording begins with a presentation by Professor Brown and Jane Walker which gives an insight into life at UCLH this year during the pandemic with reference to its impact on patients with bronchiectasis and also on our fundraising activities.

Please click here to listen to our Christmas recording.

If you would like to make a donation towards research into bronchiectasis and pneumonia led by Professor Brown and his team at UCL Respiratory, please click here
(Please use Google search engine to download the recording link).

With our warm wishes for Christmas and New Year 2021.

From Breathing Matters

Our grateful thanks to the Holst Singers and to the Lord Taverners for supporting this recording.

Autumn 2020 Newsletter – Out Now

 

For the Autumn 2020 newsletter, please click here

 

 

 

 

Bronchiectasis Fundraising Update

Update, by Jane Walker

Usually at this time, I am well under way with preparations for our main bronchiectasis fundraising event of the year, our annual Christmas Concert.  None of us imagined at our joyful concert last year that, little than three months later, our lives would be transformed by a pandemic.  Normally, by October, I would have run 5 or 6 stalls in the UCLH atrium which runs alongside Professor Brown’s Friday morning clinic. I miss all the preparation sourcing goodies to sell and making my cards and I miss seeing everyone at UCLH – some of our supporters come to every stall.  I will be restarting the stalls as soon as I am able to in 2021 and will keep you updated via the Breathing Matters website.  Fortunately, I was able to do my usual annual St Valentine’s Day stall, which was extra special this year as the actual date of the stall was Friday 14th February!

Whilst my fundraising activities at UCLH are on hold, I have been coming up with imaginative ideas so my fundraising can continue during the COVID pandemic.  During the lockdown in early May, I set myself a challenge to walk 3 miles each day over 7 days. With my lung condition, I manage shorter distances each day, but I was determined to do a much longer walk every day as a fundraiser.  I set up a JustGiving page and contacted friends, family and our concert supporters and on the JustGiving page, I posted notes and photos from my walks to share with everyone.  Through JustGiving and other donations, my walks raised a superb sum of £1000.  I was very touched by everyone’s kindness and generosity.

Our Christmas concert last year raised over £4000 for research by Professor Brown and his team of scientists at UCL.  We are very sad we can’t be all together for our annual concert this year – our friends in the Holst Singers are planning to put a small special treat together for us and I will be in touch with further details closer to Christmas.

A very big thank you to our bronchiectasis family of friends and supporters!

 

Clean Air Day Campaign

We are honoured to have worked with Health Awareness on the 2020 Respiratory Health Clean Air Day Campaign.

A printed publication is enclosed within every copy of the Guardian newspaper published on 8th October 2020 and the content is available online at www.healthawareness.co.uk/respiratory.

The campaign features exclusive content from key thought leaders and industry voices about respiratory conditions and external risk factors such as air pollution and COVID-19.

All You Want for Christmas is a Santa Dash

The Virtual Santa Dash is a 5K fun run to be done with friends and family/pets or competitively on your own. Take this 5K challenge anytime in November or December 2020. Do it in your running gear alone or dressed as Christmas elves with the family! Earn the offical Santa Dash Medal and goodie bag. Simply register for the event and you will be given access to the Virtual Marathon Series runners portal where you can submit your evidence before or on your run day.

The Virtual Santa Dash has a special challenge attached and requires you to dress up in Christmas fancy dress to complete it. The Virtual Marathon Series are also offering two prizes:

  1. The first one is for the fastest time in Christmas fancy dress, become the Christmas world record holder.
  2. Secondly, to the person who raises the most money for their chosen charity by Christmas Day.

They will donate £250 to the charities chosen by the 2 winners who will receive a goodies pack from their partner Run Through in the post.

All you need to do now is register – here’s how:

  1. Register here – you will receive a confirmation email to log in to the Secure Charity Portal where you can pay your registration fee [£25 covers the cost of the place and medal only and does not go to the charity].
  2. Breathing Matters will get notification that you have signed up for your challenge and will contact you – or you can contact us directly at breathingmatters@ucl.ac.uk
  3. Set up a Breathing Matters personal fundraising page.  It is up to you how much you want to raise for Breathing Matters; there is no minimum sponsorship limit.
  4. Sort out your Santa outfit and start training!!!

Run for Halloween … Virtually !!

Trick or treat for the kids this year might get the red flag, but why not do your own healthy version with a medal and goodie bag instead!  This 5K spooky run is great for everyone everywhere and is lots of fun. Take the challenge on or before Halloween – at a venue of your choice. Do it in your running gear or a spooky character from your favourite movie scene!

Simply register for the event and you will get access to the Virtual Marathon Series runners portal where you can submit your evidence before or on the big day.

The Virtual Halloween Run has a special challenge attached and asks that you dress up in fancy dress on Halloween to complete it. Quite simply, to earn the special challenge virtual medal, you will need to upload a picture of you at the end of your run in fancy dress as well as proof of your completed 5K.

The Virtual Marathon Series is offering two prizes:

  1. The first one is for the fastest time in fancy dress, become the Halloween world record holder.
  2. Secondly, to the person who raises the most money for their chosen charity by Halloween.

They will donate £250 to the 2 winners’ chosen charity who will each receive a goodies pack from their partner RunThrough in the post.

To apply for the fastest runner, you will need to enter your time through the Virtual Marathon Series portal and complete the 5K in fancy dress on Halloween.

To apply for the highest fundraiser, you will need to send an email to virtual@runforcharity.com with a link to your fundraising page no later than 1st November 2020.

All you need to do now is register – here’s how:

  1. Register here – you will receive a confirmation email to log in to the Secure Charity Portal where you can pay your registration fee [£25 covers the cost of the place and medal only and does not go to the charity].
  2. Breathing Matters will get notification that you have signed up for your challenge and will contact you – or you can contact us directly at breathingmatters@ucl.ac.uk
  3. Set up a Breathing Matters personal fundraising page.  It is up to you how much you want to raise for Breathing Matters; there is no minimum sponsorship limit.
  4. Sort out your Halloween outfit and start training!!!

Breathing Matters – Partner of the 2020 Respiratory Health Campaign

Breathing Matters is honoured to work with Health Awareness on the 2020 Respiratory Health campaign.

The campaign features exclusive content from key thought leaders and industry voices about respiratory conditions and external risk factors such as air pollution and COVID-19.

There are a wealth of great articles, including:

  • One person dies every hour of pulmonary fibrosis
  • Improve your quality of life with cleaner indoor air
  • Can your income make your asthma worse?
  • Breathlessness – when to seek help
  • Improving air quality around schools to protect children

A printed publication is enclosed within every copy of the Guardian newspaper and the content is available online at www.healthawareness.co.uk/respiratory.

Definitely worth a read!

 

 

 

 

Thank you all 2600 times

Due to the COVID-19 pandemic, many major fundraising events were cancelled this year, including the biggest fundraiser of all, the London Marathon.  Charities were reporting a projected loss of 48% to their voluntary income, and a third wiped off from their total income.

On Sunday, 26th April 2020 – one month ago today and the scheduled day of the London Marathon – the nation joined together to help UK charities.  The challenge was to dream up an activity based around the numbers ‘2’ and ‘6’ and donate (at least) £26 to their favourite charity.

Loads of our lovely supporters joined the 2.6 Challenge in droves to support Breathing Matters and we wanted to say thank you to you all.  You have helped us raise a very apt £2600!

Here are a few of our favourite challenges:

  • Thanks to Liz Wiazek and family for their 26 sun salutations.
  • Thanks to Jessica, Emily and Seb plus dog Megan for running 2.6 miles around Stokesley Beck, raising £373 in memory of their grandad Andy Herring.
  • Thanks to Pavan Kohli for walking 2.6 hours on a hot Sunday and raising £178.
  • Thanks to Karen, Mike, Jose and Oli Fox for running 2.6k en famille.
  • Thanks to Steph Fisher and her amazing family for raising an incredible £943 for their 2.6 challenges.
  • Thanks to Elizabeth Coe who walked her pony 26 times around the field.
  • Thank you to John McCready who wrote a lovely 26 line poem.
  • Big respect to Elisa and Andreas who did a 26 second handstand for their challenge!
  • Thanks to Val and Jack for walking up and down their corridor 26 times.
  • Thanks to Maisie McCready for walking around her garden 26 times every day for a week.
  • Thanks to Terri Russell for walk-jogging for 2.6K and ‘a little bit more’.
  • Thanks to Tom for doing 26 keepie-uppies … not easy!
  • Well done Jo Porter on giving 26 beloved books to charity.
  • Thanks to Mary Foley for walking 2.6k in 26 minutes – that’s speedy!
  • Well done Jerry Brown on completing a 2.6k bike ride.
  • Thanks to James and Emily for their 26.2 mile [marathon] bike ride.
  • Thanks to Greg and Colin who cycled 260K over the week – that’s as far as London to Sheffield! Thanks guys.
  • Thanks to Donna and Nick who did 26 Just Dance dances in 2.6 hours.
  • Thanks to the Smith family and the Howard family for doing a variety of 2.6 challenges … together – but not together.
  • Thanks to Rebecca and Ted who did 26 exercises 26 times.
  • Thanks to Sean for drinking a bottle of beer in 2.6 seconds!

Thank you to all the above plus everyone else who donated £26 and beyond to mark our 2.6 Challenge.

Carrying on with COVID-19

It is fair to say the world has changed in 2020 since the COVID-19 Coronavirus outbreak in December 2019.

Many of our research team have volunteered to work on the NHS frontline at this very busy time but, despite this, Breathing Matters is still continuing its important research work in interstitial lung diseases, pulmonary fibrosis, bronchiectasis and lung infections.

COVID-19 disease is caused by the SARS-Cov-2 virus. SARS means severe acute respiratory syndrome. So, Breathing Matters is joining the national effort in trying to find out as much as possible about this new virus; the more we know, the quicker we will have better treatments, less deaths, decreased shielding and ultimately a vaccine.

Our new studies will include researching new therapeutic agents and understanding the long-term damage to lungs in patients who have recovered from COVID-19, and perhaps give us more insights into the origins of IPF and other fibrotic lung diseases.

The funding we continue to receive from our supporters is vital to our community and to our future. Thank you so much for continuing to support our important work. Donations can be given in different ways: https://www.breathingmatters.co.uk/ways-to-donate

I am sure you would like to join us in saluting our extraordinary team who are working tirelessly in helping the nation, both on the frontline and in the labs.

Our very best wishes goes to every one of you. Please keep safe and stay alert.