It’s Chriiiiistmas !!! … Well, Almost

Yes, it’s time to start writing your Christmas list, time to start your Christmas shopping, time to work out which Xmas holly and berry
relatives you are visiting this year and time to order your Christmas cards!

Breathing Matters can help you with the latter.

This year, we have a number of options.  You could order directly online with CharityChristmasCards.com [you can use the direct link on our home page]. CharityChristmasCards.com sell both paper cards and, for those of you who are more green in nature, they also provide online cards to email to your friends and family. They also supply corporate cards so you can put your company name on the front cover.  Up to 50p per card is donated directly to Breathing Matters.

Our other option, this year, is to purchase handmade and vintage Christmas cards through Jane Walker.  Some of you will know Jane from her lovely Breathing Matters designer stalls at Easter and over the summer at UCH.  Jane has two Christmas stalls organised on Friday, 7th November 2014 and Friday, 12th December 2014, 10am-2pm at UCH Atrium, where she will be selling these cards along with some fabulous and unique stocking fillers.

If you are not able to get to these stalls, Jane has very kindly agreed to take orders and she will personally post these to you.  All profits of these sales will go to Breathing Matters.

Handmade Cards:

Red Candle and Flowers at Christmas

Red Candle and Flowers at Christmas

White Christmas Candle and Centrepiece

White Christmas Candle and Centrepiece

Red Flowers at Christmas

Red Flowers at Christmas

The above handmade cards come in two sizes:

Medium cards (104mm x 152mm) -  £2 each or 5 for £8

Large cards (145mm x 198mm) - £2.50 each  or 5 for £10

 

Vintage Cards: Vintage cards come in a mixed set of 10 for £3

Vintage Christmas Cards

Vintage Christmas Cards

 

 

 

 

 

 

 

If you would like to order any of the above handmade or vintage Christmas cards, please email Jane Walker directly on missjanewalker@hotmail.com
Whichever option you choose, good luck with all the card signing!

As to the Christmas shopping list, Breathing Matters have some ideas on that too:

  • How about buying our charity single?
  • How about buying our charity poetry book?
  • How about coming along to Jane’s charity Christmas stalls?
  • How about a great evening out at our Charity Christmas Concert?
  • Remember to buy all your online presents via ‘Give as You Live’ and a percentage of every sale is donated to Breathing Matters.
Breathing Matters would like to thank Jane
for her amazing help this year!

 

 

Exciting Announcement: Charity Christmas Concert

Xmas holly and berryWe are excited to announce that The Holst Singers (one of Britain’s foremost choirs) will be giving a Charity Christmas Concert in aid of Breathing Matters.

The Charity Christmas Concert will take place on Friday, 5th December 2014 at 7pm in the new Pavilion in the grounds of University College London, Gower Street. The concert will raise money to help fund research being undertaken at University College London Respiratory by Professor Jeremy Brown and his colleagues into the causes and treatment of bronchiectasis.

Bronchiectasis is a lung disease that most people have never heard of, yet it is not rare and affects an estimated 100,000 people in the UK of all ages, including children. Bronchiectasis results from damage to the tubes taking air into the lungs (the bronchi). The damage makes the bronchi unable to clear bacteria from the lungs. As a result, patients with bronchiectasis have almost continuous lung infections. Almost all of us has had the occasional chest infection, when for a few days we have felt grotty and had a severe cough, sometimes producing mucky looking phlegm – but patients with bronchiectasis feel like this the whole time, causing them general ill-health and making their lives miserable. Severe bronchiectasis also impairs the patient’s ability to breathe normally, so that eventually they can only walk a few yards without resting, and may die due to respiratory failure. Unfortunately, there is no cure for bronchiectasis, and there has been little research into the best ways to treat patients with bronchiectasis. For about half of patients, we don’t even know why they have developed the bronchiectasis. Despite this, research into bronchiectasis is very under-funded, which makes improving the care of patients with bronchiectasis very difficult.

Holst SingersThe Holst Singers Charity Christmas Concert will include unaccompanied seasonal music by Britten, Warlock, Whitacre and “The Lamb” by the late John Tavener. There will also be readings of Christmas prose and poetry. The BBC describes the Holst Singers as a “leading chorus on the international stage”. In concert, the choir is renowned for dramatic and engaging performances, described by The Times as “interactive concert going at its most revelatory”. Holst Singers’ performances in 2014 have included a celebration of the music of John Tavener at Christ Church, Spitalfields, and Handel’s Israel in Egypt at St. John’s, Smith Square. With the City of London Sinfonia and the choir of Trinity College, Cambridge, the Holst Singers released a CD in 2012 which included “A Ceremony of Carols” and “St Nicolas”. The choir has toured extensively both in the UK and abroad, with visits to Estonia in March 2009, Santiago de Compostela, Spain, in 2012 (with the Hilliard Ensemble), and Northern Ireland in October 2013.  http://bit.ly/1D4E9tL

Tickets cost £35, which includes refreshments served at 7pm and a substantial donation to Breathing Matters to fund research into bronchiectasis. Seating is unreserved. Tickets and further information available from Donna Basire at breathingmatters@ucl.ac.uk

If you are unable to attend the Charity Christmas Concert at UCL on Friday, 5th December 2014, but would like to make a donation in aid of Professor Brown’s research into bronchiectasis, then please contact Breathing Matters at the above email address or donate directly via the Justgiving Page https://www.justgiving.com/breathingmatters/

They’re Nuts !

Spartan RaceWhat is nuttier than taking part in a Tough Mudder? It’s taking part in another one!

After raising £4,000 in last year’s half marathon army assault event, Adam Clark has got another team together to do it again! They are doing this in memory of Adam’s father, Jim Clark.

 

The Tough Mudder is a hardcore 10-12 mile endurance running event over an obstacle course which is designed by Special Forces soldiers to test your all around strength, stamina, determination, and camaraderie.  Obstacles include Artic Enema, Sewage Outlet and Electric Eel – we will leave this to your imagine …

If you would like to support Adam and his team, please visit the team’s witty tongue-in-cheek Justgiving Page – https://www.justgiving.com/you-mud-be-joking-2014/

Good luck Adam!

 

Summer 2014 Newsletter – Holiday Quiz Answers

 

Question 1: In which year was Madonna’s song, ‘Holiday’ in the charts?

Answer: 1983, it reached number 18 in the charts

 

Question 2: Which country is the most popular for the British to take a foreign holiday?

Answer: Spain

 

Question 3: Billy Butlin opened his first holiday camp in Skegness, where was the second?

Answer: Clacton

 

Question 4: Who were the male and female leads of the 2006 film, “The Holiday”?

Answer: Jude Law and Kate Winslet

 

Question 5: In which Italian city would you find the Ponte Vecchio?

Answer: Florence

 

 

Summer 2014 Newsletter

For our Summer 2014 newsletter, please click here

Planning a Holiday Abroad? … Are You Fit to Fly?

Flying in an aeroplane is the equivalent to being 5000 to 6000 feet up a mountain.  Think of a mountain twice as high as Ben Nevis, or being a third of the way up Everest.  The air is ‘thinner’ because the pressure is less and, as a result, there is less oxygen.  In fact, the concentration of oxygen falls from 21% at sea level, to about 15%.  Most people will tolerate this, but, if you already have problems breathing, this will become worse.

For those respiratory patients who do not normally need oxygen: Patients who can walk 100 metres on the flat without needing oxygen, and at a steady pace without feeling short of breath, are very unlikely to have a problem in-flight.  These patients are considered safe to fly according to the guidelines issed by the Civil Aviation Authority.  If you can not do this, you should talk to your doctor about the safety of travelling by air.  They will be able to carry out studies where they simulate the oxygen concentration in the aeroplane cabin.  You will be sitting comfortably wearing a close fitting mask that delivers oxygen at a reduced concentration of 15%  They will see what happens to your oxygen saturations over a period of time.  They can then recommend whether or not you need oxygen during the flight.  Short haul flights are less hazardous than longer ones.

For those respiratory patients that already need oxygen: Talk to your doctor about how much oxygen you will need in-flight.  This may be a higher flow rate than you normally use.  You must also remember to arrange oxygen to be available at your holiday destination.  Your local respiratory nurse will be able to offer you advice on this.

For all those patients that need oxygen on the flight: Remember to let the airline and/or travel agent know in good time, ideally a month before you fly.  Some, but not all airlines, charge for the oxygen and it might be worth planning your flight with an airline thay does not charge.  Do not rely on the airline having oxygen avalable at the last minute; the oxygen the airlines carry is for emergencies and would not last very long.

Final checklist once oxygen is sorted … don’t forget:

  • Check your insurance policy covers you for medical costs and return home.  The British Lung Foundation has a list of insurance companies that will insure patients with lung diseases.
  • Bring your EHIC [European health insurance card] if travelling to the EEA or Switzerland.  Phone 08456 062030 or visit www.dh.gov.uk/travellers.
  • Arrange disabled assistance at the airport if required.
  • A letter in your hand luggage detailing your condition and medications.
  • Medication in your hand luggage plus one spare week’s worth.
  • And, most impotantly, don’t forget to have fun! 

 

Charity Bike Ride, 8th June 2014, Round-up

The sun was out, the picnics were plentiful, the sunbathing was rife …. oh yes and there was a charity bike ride going on …. in Richmond Park early this month.  Each year, we wonder if the rain will stay away; this year, we almost fried with the heat of the sun!

Almost 100 riders cycled seven miles around beautiful Richmond Park on Sunday 8th June 2014 in support of five UCLH Charity funds; Breathing Matters, Dementia Care, Leukaemia and Lymphoma Unit, Rays of Hope and TTP Research.

Cyclists included patients, relatives, doctors, researchers and families with children as young as four years old – along with our resident dog, Dexter.   Two of our regular cyclists ran the route this year instead, “I won’t be doing that again” stated Greg, before collapsing under a tree. 

Theresia, Jo, Donna and Manjiry

Theresia, Jo, Donna and Manjiry

Our Patron and Medical Director, Manjiry Tamhane and Dr Jo Porter, along with friends, formed a team called ‘Girls on a Mission’ for the challenge and smashed their fundraising target of £1000.  Here is Manjiry and Jo along with Donna Basire (organiser) and Dr Theresia Mikolash (BM Clinical Fellow).

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

Over £11,000 has been raised so far for this event for Breathing Matters alone, which is almost triple last year’s total.

Look out for the 2015 date!

Support our Summer Stall 11.7.14

Summer is here!  And our Summer Stall is almost here too!!

The lovely Jane Walker is organising the Breathing Matters’ Summer Stall at UCH Atrium on Friday, 11th July 2014.

The talented Jane has designed kids’ summer picnic/holiday bags, cards and coasters.  Also on sale will be fans, colouring books, games and this year’s must-haves … loom bracelets.

Do come along and support us!

Spring 2014: Quiz Answers

Question 1: What was the name of the film the original Jamaican bobsleigh team inspired?

Answer: Cool Runnings.

 

Question 2: How many medals did Team GB win in the 2014 Winter Olympics?

Answer: 4 medals consisting of Gold x 1, Silver x 1, Bronze x 2.

 

Question 3: In which Winter Olympics did Eddie the Eagle compete in?

Answer: 1988, Calgary.

 

Question 4: Which country was top of the medal board in 2011?

Answer:  Canada with Gold x 14,  Silver x 7, Bronze x 5 medals.

 

Question 5: Upon which Sea is Sochi located?

Answer: The Black Sea.

 

Question 6: In which year was the first Winter Olympics held, and where?

Answer: 1924 in Chamonix, France.

IPF: The Game Is On, The Game Is Changing …

Until recently, we have had very little to offer patients with Idiopathic Pulmonary Fibrosis (IPF).  The disease is on the increase, tends to affect men in their late middle age, and has a prognosis worse than most cancers (50% of patients will die within three years of diagnosis).

The approach to the patient with presumed IPF, appears primitive compared to the sophisticated approach to the cancer patient. No-one would treat a cancer patient without a biopsy, but only a tiny minority of IPF patients undergo lung biopsy because of the morbidity and mortality associated with this surgical procedure; as a result, most patients receive a diagnosis of IPF on the basis of a history and typical CT scan results. There is a wealth of drugs on offer for the patient with cancer, but until now, there has been limited and conflicting evidence that any drug can alter the course of IPF. 

Until now  ……….  Last week at the American Thoracic Society, new data was released from a number of clinical trials that are published in the latest edition of the New England Journal of Medicine, the most established and reputable international medical journal. 

The studies published included the INPULSIS™-1 and -2 trial (Nintedanib, previously BIBF-1120 in IPF) and the ASCEND trial (Pirfendione in IPF).

Nintedanib is an investigational small molecule tyrosine kinase inhibitor in development by Boehringer Ingelheim for IPF.  It targets growth factors, which have been shown to be potentially involved – the vascular endothelial growth factor receptor (VEGFR), fibroblast growth factor receptor (FGFR), and platelet-derived growth factor receptor (PDGFR).

The two Phase 3 INPULSIS™ Trials of Nintedanib involved a total of 1,061 people with mild to moderate IPF treated for 52 weeks, and showed that Nintedanib reduced the lung function decline compared to placebo. The studies did not follow enough patients for long enough to comment on effects on mortality, but there was a trend towards reduced death rates in the Nintedanib group. The most frequent adverse event was diarrhoea, affecting 61.5% of patients on Nintedanib. 

However, before we get too excited, the patients in INPULSIS™ all had reasonable lung function (average lung capacity was 80% of that predicted and around 2700mls); the lung volume lost in the treated group over a year was 114ml compared with 228ml in the untreated group.  We are talking about small volumes, 114ml ~4% of the total lung volume saved over a year – or the same volume as one third of a can of coke out of a total of nearly 3 x 1 litre bottles. Will this translate into a serious impact on exercise ability and life expectancy?  Will there be effects on mortality given that there were no effects on acute exacerbation frequency? What will be the effect on patients with moderate to severe disease, the ones that are not caught early and perhaps have more progressive, aggressive disease?

The ASCEND trial was the fourth Phase 3 study to look at the effect of Pirfenidone (Esbriet) in 555 patients with IPF.  The American FDA has not licensed this drug, thought to act by inhibiting TGF β1, because the results of the first three trials in IPF were mixed. In the ASCEND trial, Pirfenidone reduced the one year rate of decline in FVC, with evidence, from pooling data from all four studies, that it may also reduce mortality. The patients in ASCEND had worse disease than in INPULSIS™ which may explain why they declined more quickly. Pirfenidone saved ~140mls of lung function per year.

Tempering the enthusiasm of the positive studies, is the realisation that the drugs didn’t make people feel better, stop disease progression, cure the disease or reverse the fibrotic damage – the ultimate therapeutic goals.  Coming with these sobering thoughts was the report of PANTHER-IPF.  Disappointingly, N-acetylcysteine or NAC was shown not to slow the rate of decline in FVC (although it may reduce the toxicity of prednisone and Azathioprine in IPF). However, one drug did offer some promise. FibroGen presented their Phase 2a study of FG-3019, an investigational monoclonal antibody that inhibits connective tissue growth factor (CTGF).  The trial recruited 37 patients with mild to moderate IPF of whom 33 completed 48 weeks of treatment. After 48 weeks of treatment, 12 of the 33 patients (36%) had improved fibrosis (unheard of in IPF before now) and two patients had stable fibrosis. This means that 14 patients (42%) had improved or stable fibrosis, improved lung function and felt better. Eighteen of the 33 patients continued FG-3019 treatment for a second year, and four continued to improve, but the rest worsened.

So where does that leave the patient with IPF and his clinician as the nihilistic approach begins to disperse?  What should we do with the mounting evidence that immunomodulation (with Cyclophosphamide and Rituximab) although beneficial in inflammatory pulmonary fibrosis (PF), such as that associated with rheumatoid arthritis and scleroderma, may increase mortality in IPF?  

More than ever before, we believe that it is essential to make a confident diagnosis in all patients with PF, to separate out those with IPF from those with inflammatory pulmonary fibrosis, and, in many cases, this requires a biopsy of the affected lung.   Our own work establishing non-invasive bronchoscopic cryoscopic lung biopsy to rigorously identify those with IPF, from those with other forms of PF, is set to be a game changer.

Breathing Matters has funded the research that has set the stage for a full application to the NIHR for a proper study on the role of cryoscopic lung biopsy (CLB) in the management of PF of unknown cause. It no longer seems fanciful to imagine a time when a patient with PF will be worked up with a scan and a CLB that will provide an individualised diagnosis; this result will guide the clinician on how best to manage their patient.

 

Although we are behind our cancer colleagues, (the standard of diagnosis and treatment options that they offer their patients is superior to that offered to patients with PF), the distance is closing, and it will not be long before they feel our toes on their heels!   The game is on……!