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Will you be a doer, a goer or a giver at Christmas?

 

If you are a doer – why not organise your own Christmas event … a cheese and mulled wine evening, a harvest festival, a Christmas swish party (exchanging glittery outfits for a donation) or join a Santa Run.  Have a look at our events page for inspiration: http://bit.ly/2zFd6fM

 

If you are a goer – why not attend our Christmas Concert on Friday 8th December 2017 at 7.30pm in the beautiful St Pauls Actors’ Church in Covent Garden.  There will be traditional carols along with interactive Christmas tunes. Tickets are £25. This really is not to be missed and starts off the festive season so nicely! For more information, visit: bit.ly/2tIYbO9   

 

If you are a giver – why not support us by buying charity Christmas Cards, you can order directly online with CharityChristmasCards.com  They sell paper cards, online cards and corporate cards.  Up to 50p per card is donated directly to Breathing Matters.

For those of you around the London area, why not come along to our Charity Christmas Stalls on Friday 17th November 2017 or Friday 1st December 2017, 11am-1pm, at UCH Atrium for stocking fillers, jewellery and designer Christmas cards. If you are interested in purchasing our handmade Christmas cards which Jane Walker has designed, contact us directly on breathingmatters@ucl.ac.uk

 

A lot of you simply donate to charity instead of spending too much money on obligatory Christmas pressies.  If you do this, you are also considered ‘a giver’ and are much loved by all.

https://www.justgiving.com/breathingmatters

 

Would you like to find out what type of Christmas charity supporter you are?  Read our article: http://bit.ly/19gNAoH

A very merry Christmas to all our fantastic supporters.  A healthy and happy Christmas to all doers, goers and givers!

 

Show and Tell Meetings

We have been busy this autumn meeting our fabulous supporters and patients and presenting our research work.

We had two separate patient/supporter meetings; one for bronchiectasis, and one for pulmonary fibrosis to celebrate #Breathtember (Pulmonary Fibrosis Awareness Month).

At the Pulmonary Fibrosis/Interstitial Lung Disease event, Dr Porter along with our fabulous clinical fellows and scientists presented their integral and very interesting research work into PF.

Presentations included:

  • Dr Akif Khawaja:  The role of neutrophils in Interstitial Lung Disease: a novel target for treatment.
  • Dr Deborah Chong: The role of platelets in Interstitial Lung Disease.
  • Dr Theresia Mikolasch: The first UK non-invasive lung biopsy service.
  • Dr Theresia Mikolasch: Using Cryobiopsy to assess Inhaled drug delivery to the distal lung.
  • Dr Manuela Plate:  Can we use circulating DNA to tell us about genetic changes in the lung?
  • Dr Wes Wellard:  Finding new genetic mutations in patients with IPF.
  • Dr Jagdeep Sahota:  The role of mucins in IPF.

After lunch, the focus group discussed future areas of research into interstitial lung disease.

The scientists loved meeting you 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 were also treated to Jane Walker’s personal and touching account of coping with her condition. Jane organises our annual Christmas Concert and we were lucky to have one of the Holst Singers along with a representative from Pharma Profile who has given a donation towards the costs of staging this concert, with us that evening.

It was so lovely to meet so many of you in person and we look forward to seeing many of you at our Christmas Concert at St Paul’s Church in Covent Garden on Friday, 8th December 2017.

These meetings show how Breathing Matters have helped research into both lung diseases since our inception in 2011, and it is thanks to all our fundraisers and donors that this has been achieved.

We could not have done this without your support – thank you!

 

You Got out of Breath for #Breathtember!

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

From hiking, cycling, climbing to giving up fizzy drinks.  You all did your best to spread the word about pulmonary fibrosis.

Our #Breathtember twitter champion this year was ….. Steve Wright who walked a fantastic 50 miles during the month.

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!

Get out of Breath for #Breathtember this September

September is #Breathtember – Global Pulmonary Fibrosis Awareness Month

 Get out of Breath for #Breathtember

https://www.breathingmatters.co.uk/wp-content/uploads/2013/06/twitter.png

Tweet Tweet!

To help raise awareness, we would ask that supporters tweet different challenges each day in September including the term ‘#Breathtember and to ask their followers to retweet and share this information as widely as possible.

Think outside the box for your challenges – getting out of breath for you could mean:

  • Cycling around your local park
  • Doing a colourful or musical 5K/10K run or walk
  • Singing until you are out of breath
  • Walking over the wonderous London bridges
  • Blow bubbles!
  • Skydiving
  • Or just simply walking up the stairs!

The important thing is that you tweet your challenge every day including the term ‘#Breathtember’ to raise awareness of pulmonary fibrosis.  Add a photo if you like.  This September, we want as many people as possible to see the term ‘#Breathtember’.  To make the biggest impact, the aim is to get the term ‘#Breathtember’ to trend.

Follow us on Twitter for further details: @breathingmatter 

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Christmas Concert Tickets Now Available

A CHRISTMAS CELEBRATION

WITH THE HOLST SINGERS

Friday 8th December 2017 – 7.30pm

St Paul’s Church, Covent Garden

Our annual Christmas Concert with the Holst Singers will take place on Friday 8th December at 7.30pm. The Holst Singers is one of Britain’s foremost choirs, described by the BBC as a “leading chorus on the international stage”.  The concert takes place in the lovely setting of the 17th century St Paul’s Church on the Covent Garden piazza that was designed by Inigo Jones, and will feature well-known traditional carols, as well as more contemporary Christmas music.

The concert will raise money for Breathing Matters, and in particular research into Bronchiectasis led by Professor Brown at University College London.  Our guest readers this year are well known BBC Radio Presenters Nigel Rees and Charlotte Green. Nigel Rees is a writer and broadcaster who has been presenting Radio 4’s “Quote….Unquote” for 40 years.  Charlotte Green has been a familiar voice on the radio for many years, having been the news reader for the Radio 4 “Today” programme and presented the comedy programme “The News Quiz”, and currently being the “reader” for “Quote….unquote”.  In 2013, she joined Classic FM as well as BBC Radio 5 Live, where she announces the football results.

Book your tickets now for what promises to be an evening of wonderful festive entertainment.

Tickets (£25) are now on sale here.  For further information and paper tickets, please contact Jane Walker either by email missjanewalker@hotmail.com or by phone 01732 366346.

 

”Donation received from Profile Pharma, towards the costs of staging this concert”

 

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Cyclotopia – Another Success!

What a sunny fun day out Cyclotopia was this year!

Over 100 riders, young and old, enjoyed our bikefest of activities including the smooooth traffic-free road circuit, the challenging mountain trail, the even more challenging Velodrome, along with the kids’ pump track in the centre of the Velodrome itself – while plenty others watched, cheered and had ice creams.  There were prizes too: for the fastest cyclist around the Velodrome, on the watt bikes and around the road circuit.  The prizes were given out by Mark Colbourne MBE, paralympic champion and inspirational speaker along with our sponsors Cycle Republic.

The event brought in over £5000 for Breathing Matters and Haematology Cancer Care, both UCLH Charities.

We are once again very grateful to our fabulous volunteers, without whose help this event could not have taken place.  We are indebted to you all.

Thank you also to Mark Colbourne MBE, Cycle Republic and to the amazingly helpful and professional staff at the Lee Valley VeloPark.

Next year’s event will be on Sunday 20th May 2018 – save the date in your diary now!

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disneyland ticket auction – make your bid now

—————————————————AUCTION!!!!!!———————————————

FIVE TICKETS to DISNEYLAND PARIS have been kindly donated to Breathing Matters.

These need to be used by Sunday, 4th June 2017 so this would include the Summer half term break and the late May Bank Holiday weekend.

The tickets are for one day without any restrictions (anytime weekdays or weekend) and allow entry to Disneyland Paris. The tickets are worth £62 each, but Breathing Matters will give them to the HIGHEST BIDDER.

Please pledge your donation by emailing breathingmatters@ucl.ac.uk

This auction will close on the evening of Monday, 22nd May 2017 and the highest donor will be informed the day after, on the Tuesday. You will need to be contactable on your email on the Tuesday. Once the pledged donation is received via bank transfer, the tickets will be sent to you by recorded delivery.

What are you waiting for ….. decide on your charity pledge now.

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Summer 2017 Newsletter Holiday Quiz – here’s the answers

[Taken from Trip Advisor]

 

Q:           What were the 5 top travel destinations for the UK traveller in 2016?

A:            Majorca, Tenerife, Ibiza, Crete, Lanzarote

 

Q:           What was the average cost of a one week summer trip to New York?                                        – £1,937, £2,586 or £3,010

A:            £1,937

 

Q:           Which is cheaper? – the average meal cost in Majorca or in Tenerife?

A:            Tenerife at £13 per meal.   (Majorca is £17 per meal.)

 

Q:           How many Brits travelled to Spain for their holiday in 2016?                                                        – 20 million, 64 million or 75 million

A:            A record breaking 75million.

Summer 2017 Newsletter

New Bronch UK Bronchiectasis Study

Patients attending Professor Brown’s clinics who have bronchiectasis are now being recruited for a Medical Research Council funded study into bronchiectasis called Bronch UK.  This is the first study funded by the Medical Research Council into bronchiectasis for many years, and involves nine different centres across the United Kingdom including UCLH. The aim of the study is to describe the spectrum of disease caused by bronchiectasis, including the underlying causes, how severe the disease is and how it actually affects the patients’ quality of life.

In addition, the Bronch UK study has created a network of hospitals ready to do other research into bronchiectasis; for example, the Bronch UK network was used to obtain funding from the Health Technology Assessment scheme for a trial into how effective nebulized hypertonic saline could be in helping patients with bronchiectasis.

For the Bronch UK study, we aim to ask about 100 to 150 UCLH patients with bronchiectasis who are seen in Professor Brown’s clinics to take part.  Patients who agree to take part need to fill in a couple of health questionnaires, donate a blood and sputum sample, and give permission for the details of their condition to be used by the researchers.  There will be a repeat assessment of each volunteer participant in three years time, as that will allow us to identify what factors influence how patients fare over time.

So far at UCLH, we have recruited nearly 40 patients, and our very keen research nurse Joel Solis will be actively recruiting more patients for the study at the Friday morning clinics over the next few months.  He will usually send a letter to selected patients a few days before they are coming to clinic to ask whether they would like to be involved, and then talk to each patient in depth at the clinic itself.  Patients are selected randomly, and we would like to recruit about a third of patients coming to Professor Brown’s for the study. We hope to avoid volunteers for the Bronch UK study having to come back to the hospital outside of their appointment days by collecting the data and samples we need on the same day as the hospital appointment.

We are very grateful for the patients who have agreed to take part in the Bronch UK study so far – almost everyone asked to take part has so far said yes, and it is very gratifying to have such a positive response.

Bronch UK is an important study – it shows that the research funding bodes recognize that bronchiectasis is an important disease that needs further research, and the results from the study itself will tell us a lot about bronchiectasis that we did not know and will stimulate more research into bronchiectasis. This should all lead to better ways of treating patients and thereby reduce the problems this disease causes.