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tributes & thank you's

#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