Charity

Cystic Fibrosis Trust
The Cystic Fibrosis Trust is the UK's only national charity dealing with all aspects of Cystic Fibrosis. It funds research to treat the symptoms of CF and to find an effective treatment. It also aims to ensure appropriate healthcare for those with Cystic Fibrosis and provides information, advice and support to people with CF and their families across the UK. Cystic Fibrosis is one of the most common, life-threatening diseases in the UK. It affects over 9,000 people and 1 in 25 of us carries the faulty gene that causes Cystic Fibrosis. If two carriers start a family, each child has a 1 in 4 chance of having Cystic Fibrosis. Cystic Fibrosis affects the internal organs, especially the lungs and digestive system, by clogging them with thick, sticky mucus making it hard to breathe and to digest food. People with Cystic Fibrosis have to endure a rigorous daily treatment regime including physiotherapy to clear the chest, inhaled and injected drugs to thin the mucus and fight infections and dozens of enzyme pills to help digest food. Each week, five babies are born with CF and sadly, each week three young lives are lost. Only half of those with Cystic Fibrosis are likely to live past their late 30s, but a baby born today can expect to live longer. We seek to continually improve standards of care for people with CF; we commission cutting-edge clinical and scientific research; and provide practical and accurate information to people with CF and their families. None of this would be possible without the support of the CF community and the generosity of the public.


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Razor Girls' Hair Brained Scheme

Fundraisers: 
Sara Austin, Catherine Upstone

My page: http://uk.virginmoneygiving.com/team/razorgirls

Welcome to our page and thank you for taking the time to read this. In the next four weeks we (Catherine Upstone and Sara Austin) are hoping to raise as much money as we can for the Cystic Fibrosis Trust.  In order to do this we have set ourselves the personal challenge of having all our hair shaved off, something which neither of us are particularly looking forward to.  In fact there is a developing fear in the pit of our stomachs about how cold and vulnerable we might feel, let alone the fact that we will look like a peanut head or Lord Voldemort on a bad day.....

However, our discomfort will be short-lived and our hair will grow back.  Unlike the symptoms and discomfort our children experience every day of their lives.

Our children Samuel and Cerys are fabulous, funny and beautiful, like all young children.  They also suffer from Cystic Fibrosis.

Cystic Fibrosis means that these children can NEVER have a day where they can escape their condition as the medical regime CF demands is both time-consuming and hard work.  Cerys and Samuel can never escape the fact that they must take over 30 tablets a day to maintain physical health and fight infection.  As much as they would like to, they can never avoid the nebulised drug treatment which happens daily.  And try as they might, neither Samuel or Cerys can ignore the fact that if they are to stay well on a daily basis they must undergo strict physiotherapy sessions 2/3 times every day.  Hospital admissions are an inevitable part of life and painful and distressing treatments like IV antibiotics and bronchoscopies are standard.

And despite all this, the fight against this disease that that our families have every minute of our day, it is also a fact that we cannot halt its progression, we can only delay it.  Slowly but surely, the condition of our children's lungs is being eroded by Cystic Fibrosis.  Slowly but surely their lung function will drop and drop until the lungs are no longer able to take the oxygen they breathe and convert it into life- giving energy.  In short, Cystic Fibrosis is a life threatening condition which is likely to take their lives before they reach middle age.  Many suffers die before they even reach adulthood.

BUT IT DOESN’T HAVE TO BE THIS WAY.

The Cystic Fibrosis Trust has been instrumental in funding research into a new and revolutionary treatment for Cystic Fibrosis which may remove the life threatening element of this condition completely.  The drug is in its final stages of research and development and is showing very positive results on CF patients - results which have exceeded the scientists initial hopes and expectations.

A LIFE CHANGING TREATMENT WHICH WILL CHANGE THE LIVES OF THOUSANDS OF FAMILIES LIVING WITH CF IS WITHIN OUR GRASP.

But it is not an inexpensive venture.  In fact it is an extremely costly project which was in danger of collapsing due to lack of funds only a year ago.  But because of the perseverance of families and friends affected by this disease, along with the hard work of the CF Trust and the scientists belonging to the research Consortium, we believe we have found the funding to take this research to its conclusion.

And that’s where you come in!!  Our families have pledged to the CF Trust that, in order to ensure that this incredible research does not collapse due to lack of money, we would guarantee to provide a contribution of £4,000.  (Between us we have already contributed well in excess of £30, 000). We will do this with the help of friends and family and in as many ways that we can think of – we must raise this money to save our children's futures.

 

Through Virgin Money Giving, you can sponsor us and donations will be quickly processed and passed to charities. Virgin Money Giving is a not for profit organisation and will claim gift aid on a charity's behalf where the donor is eligible for this. We really appreciate all your support and thank you for any donation you may be able to give.

Recent donors

06.06.13 To all those who said you'll look fabulous.....I confirm it...she does!! Well done Sara....what a truly wonderful mother you are to such a truly fantastic son.... Much love...xxx

30.05.13 Assuming you have had to augment your hat repot ire as a result. In which case - I take MY hat off to you.

19.05.13 How marvellous you look and what a wonderful way to fund raise. Good luck

13.05.13 Well done Sara. What a truly brave and selfless thing to do. We are full of admiration.

12.05.13 From Shaun to shorn - well done Sara!

07.05.13

04.05.13

04.05.13 Full of admiration!

02.05.13 Well done Sara, as I said a brave move but well, well worth it!

01.05.13 Well done Sara!

30.04.13 You're amazing! Hope you're not too chilly. And you still look gorgeous Sara! Shayna, David, George and Louis x

30.04.13 Well done Sara & Catherine

29.04.13 Hope the weather warms up for you very soon! Well done

29.04.13 you are truly special and amazing mums x

29.04.13 Well done both of you xx

29.04.13

29.04.13 Fantastic job girls! And you both look very beautiful! Sorry I'm late as usual but with you anyway! Hope you reach your target!

29.04.13 You both look beautiful!!! As promised donation of cost of 2 yoga day places xx

29.04.13 From friends at Yardley School

29.04.13 You mad but courageous ladies.

28.04.13 I kid you not I was filling up watching the video, so very proud of you both. xxxx

28.04.13 When you both look in the mirror.... BE PROUD! Look how much money you've raised! You both look beautiful! Lots of love x x x

28.04.13 Hello - I am in awe of your dedication to fundraising, the amount you've raised and all your hard work. Well done! Deborah

28.04.13 Fantastic Sara, very brave but you look amazing! Well done x

28.04.13 Well done from Jackie, Ian, Barney, Teddy, Lottie and Bella x.

£8,799.00

Running total

Target:
£9,000.00
Total raised incl. Gift Aid:
£10,224.00
Total donors:
195
Last donor:
Sam, Paul, Ieuan & Iestyn
06.06.13  
Offline fundraising:
£2,530.00