cystic fibrosis awareness
TRANSCRIPT
Project Brief Prepared for: The Church Lads’ & Church Girls’ Brigade in conjunction with the Cystic Fibrosis Trust
Cystic Fibrosis Awareness
17th - 21st July 2019
SUMMARY Objective
The objective of this to raise awareness of Cystic Fibrosis and take part in a challenge to raise
money.
Project Outline
• Project encourage to take part over 2 weeks.
• First Week: Members to learn about the Cystic Fibrosis condition using the material provided in
this brief and discuss and agree the Big Bounce challenge.
• Members to take home sponsor forms for the challenge and information to inform parent/
guardian of the project.
• Second Week: Big Bounce challenge to take place.
It is suggested that sponsorship is sent to to National Headquarters and will then be added up and
sent to the Cystic Fibrosis Trust together. Companies to let NHQ know if they are taking part.
MATERIALS Poster
Poster for the Big Bounce Challenge to advertise in the place you
meet
Advertising
If you would like further advertising such as banners, balloons and
collection tins then please contact the Cystic Fibrosis Trust at
Equipment
Bouncy hoppers are available from the Cystic Fibrosis Trust if
required
Sponsorship Form
Sponsorship form included in the pack to give out to members to take home
Certificate
Certificate can be printed for each member that took part
Record of pledges and gift aid declarations
Nam
e of participant:
Event:
Title First name Last name Home address Postcode Amount pledged £
Datereceived
Gift Aid?
Gift Aid amount £ (for office use only)
Mrs Bea Generous 123 Street, My Town
ABC 123 £10.00 01/10/2103 √
Please provide your full name, home address and postcode so we can
Thank you for your support
Total donations received
£ Total Gift Aid donations
£
Date donations given to Cystic Fibrosis Trust / /D D M M Y Y Y Y
Ref: / /
For office use only
Sponsorship form
Event:
Full name:
Home address:
Postcode:
Phone (daytime):
Email:
Would you be happy to hear from us about:
Other events and activities you can get involved in? yes no
The Trust’s work and other ways you can make a difference? yes no
How would you like us to stay in touch? Mail yes no Email yes no Phone yes no
Please note that we aim to send emails where possible to save money, but will sometimes contact you by mail or phone.
Once your fundraising is complete, please return this form together with all the money you raise.
Date of event:
Phone (mobile):
Fighting for a Life Unlimited
Please photocopy this form
if you need m
ore space, but please return to us all form
s written on by sponsors so that
we can process G
ift Aid.
Sponsors: please print clearly in block capitals
In order for Gift A
id to be claimed, sponsors m
ust complete the form
in their own handw
riting.
What is Cystic Fibrosis?
Cystic Fibrosis is a genetic condition that affects around 10000 people in the UK. It is a life limiting
condition that affects the lungs and digestive systems. People with CF take a lot of medication
and require a lot of treatment maintain their health.
https://youtu.be/4IGz5p4n8Fg This is a good video to show the members which sums up what
Cystic Fibrosis is by someone who has CF.
https://youtu.be/WuI72eMrIQI This video is aimed at younger children
https://youtu.be/AVg24S_pSmo This video is aimed at older children
There also lots of information available at www.cysticfibrosis.org.uk
Advertising
Advertising for the CF Trust and also for CLCGB would be beneficial for both organisations. If any
groups would like to advertise their project and the fundraising work they have done then you
could contact local newspapers and use social media.
Please take pictures, if you have consent from members, and we can gather them together to
use as a national story as well.
It is important to be seen to be raising money for other organisations as well as CLCGB. This will
bring the people within your company together and be able to advertise the good work your
company is doing for others.
Cystic fibrosis (CF) is a life-shortening genetic condition that slowly damages the lungs and digestive system.
How do you get cystic fibrosis? Cystic fibrosis is an inherited condition caused by a faulty gene. You can’t catch cystic fibrosis, or develop it later in life. For someone to have CF, they must inherit two copies of the faulty gene – one from each of their parents.
The faulty gene is carried by 1 in 25 people.
A carrier does not have cystic fibrosis, they just carry one copy of the faulty gene that causes it. If two people who carry a copy of the gene (carriers) have a baby, there is:
a 25% chance the baby will have cystic fibrosis
a 50% chance the baby will be a carrier of the faulty cystic fibrosis gene
a 25% chance the baby will neither be a carrier nor have cystic fibrosis
How does cystic fibrosis affect the body?
The faulty gene disrupts the movement of salt and water in the body’s cells, causing the mucus that naturally occurs in the body to be thicker and stickier than in people without cystic fibrosis. This sticky mucus causes problems, particularly in the lungs and digestive system, but can also affect other parts of the body. The small airways in the lungs can get clogged up with the mucus, causing infection and, over time, damage to the lungs. For many people with CF, blockages in the pancreas mean a lifelong need for enzyme supplements and a special diet.
People with cystic fibrosis often have some or all of these symptoms:
frequent chest infections
a severe or prolonged cough
wheezing or shortness of breath
abnormal bowel movements
difficulty gaining weight, and
for most men, infertility.
How many people have cystic fibrosis?There are more than 10,400 people living with cystic fibrosis in the UK.
Each week in the UK five babies are diagnosed with the condition.
Who gets cystic fibrosis?The vast majority of people with cystic fibrosis are Caucasian. However the condition is found in many different ethnic groups.
How is cystic fibrosis diagnosed?Cystic fibrosis is usually diagnosed soon after birth through the routine heel prick test. Older children and adults who were not screened at birth may be diagnosed with cystic fibrosis later in life.
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cystic fibrosis carrier carrier unaffected
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Can I be screened to see if I am a carrier of the faulty gene?A simple blood test can establish if someone is a carrier of the CF gene. Carrier testing may be available on the NHS if a relative has cystic fibrosis.
How is cystic fibrosis treated?A range of daily treatments is needed to tackle cystic fibrosis effectively, including:
antibiotics to fight infection in the lungs
physiotherapy to help shift the mucus that builds up around the organs
enzyme capsules with food
a special diet to ensure the body gets the nutrients it needs
drugs to thin mucus, and
if conventional treatments are no longer effective, a lung transplant might be needed.
People with CF can spend a long time each day doing their treatments.
Is there a cure?There is currently no cure for cystic fibrosis.
Each week in the UK two people die of the condition.
However, understanding and treatment of cystic fibrosis are improving all the time. What is the life expectancy?Cystic fibrosis affects everyone differently, so it’s hard to say what an individual’s life expectancy is. The most recent figures suggest that half of people with CF will live past their 47th birthday, but it’s thought that a baby born today with cystic fibrosis could live longer as life expectancy continues to increase with advances in treatment and care. Can people with cystic fibrosis live a normal life?Cystic fibrosis is a serious condition that needs careful management. However, with the right care and treatment, people with cystic fibrosis can lead a full life, albeit with compromises and challenges. Many people with CF are able to work, travel and have families. I’ve heard people with cystic fibrosis cannot meet each other – is that true?People with cystic fibrosis are prone to lung infections that can be very harmful to others with the condition. Each person may carry different bugs in their lungs, which can be passed on by being around each other. To avoid the risk of cross-infection, people with cystic fibrosis are advised not to mix with each other at all.
How do we help? As well as working hard to create a brighter future for people with CF, the Cystic Fibrosis Trust is supporting people affected by CF in the here and now.
Our helpline offers a confidential information and listening service for all worries or questions, big or small. Peer-to-peer support is available through our CF Connect service and on the online forum; both offering support through sharing with others affected by cystic fibrosis.
The Cystic Fibrosis Trust can also provide financial assistance in times of need or even to help with the cost of holidays. Contact our helpline on 0300 373 1000 for more information about these services.
How can you help us?
Supporters of the Cystic Fibrosis Trust generously donate their time, money and voices to help us fight for a life unlimited by cystic fibrosis. There are lots of ways you can help, for example:
Spare some time and organise a fundraising event Make a donation – either personally or get your workplace involved
Lend your voice to our campaigns or to raise awareness of the condition
Take a look at cysticfibrosis.org.uk/get-involved for more information on getting involved with the Trust. To make a donation please visit cysticfibrosis.org.uk/donate.
What does the Cystic Fibrosis Trust do?The Cystic Fibrosis Trust is the only UK-wide charity dedicated to fighting for a life unlimited by cystic fibrosis for everyone affected by the condition. We invest in cutting-edge research to develop improved treatments, drive up standards of clinical care at specialist CF centres and clinics across the UK, provide trusted information, advice and support to those affected, and campaign hard on the issues that matter.
How can I find out more about cystic fibrosis?Visit our website cysticfibrosis.org.uk
© Cystic Fibrosis Trust 2019. Registered as a charity in England and Wales (1079049) and in Scotland (SC040196). A company limited by guarantee, registered in England and Wales number 3880213. Registered office: Cystic Fibrosis Trust, 2nd Floor, One Aldgate, London EC3N 1RE.
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cysticfibrosis.org.uk/bigbounce
Date:
Time:
Location:
Entry fee (if applicable)
Contact:
© Cystic Fibrosis Trust 2015. Registered as a charity in England and Wales (1079049) and in Scotland (SC040196). A company limited by guarantee, registered in England and Wales number 3880213. Registered office: Cystic Fibrosis Trust, 2nd Floor, One Aldgate, London EC3N 1RE. Please recycle.
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Record of pledges and gift aid declarations
Name of participant: Event:
Title
First
nam
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st na
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Hom
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Post
code
Amou
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pledg
ed £
Date
rece
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Gift
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Gift
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Tota
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dona
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Date
don
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Cyst
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Ref:
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For o
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Spon
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Full n
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you
raise
.
Date
of e
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:
Phon
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Please photocopy this form if you need more space, but please return to us all forms written on by sponsors so that we can process Gift Aid.
Sponsors: please print clearly in block capitals In order for Gift Aid to be claimed, sponsors must complete the form in their own handwriting.
Around half of people 40
© Cystic Fibrosis Trust 2019. Registered as a charity in England and Wales (1079049) and in Scotland (SC040196). A company limited by guarantee, registered in England and Wales number 3880213. Registered office: 2nd Floor, One Aldgate, London EC3N 1RE.
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cysticfibrosis.org.uk
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with cystic fibrosis will not live to celebrate their 40th birthday.
You can’t catch cystic fibrosis – it’s a genetic condition you’re born with – and there’s currently no cure.
More than two million people carry the faulty gene that causes cystic fibrosis, most without knowing it.
.
cysticfibrosis.org.uk /donate
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cysticfibrosis.org.uk
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is the average number of tablets that people with cystic fibrosis have to take every day
People with cystic fibrosis, like David, soon learn it’s a lifelong challenge: vast daily intakes of drugs, time-consuming physiotherapy and isolation from others with the condition, just to stay healthy.
Despite this, it can critically escalate at any moment.
We’re here to shout louder and make a daily difference to people with cystic fibrosis and those who care for them, but we need your help.
cysticfibrosis.org.uk /donate
© Cystic Fibrosis Trust 2019. Registered as a charity in England and Wales (1079049) and in Scotland (SC040196). A company limited by guarantee, registered in England and Wales number 3880213. Registered office: 2nd Floor, One Aldgate, London EC3N 1RE.
© Cystic Fibrosis Trust 2019. Registered as a charity in England and Wales (1079049)
and in Scotland (SC040196). A company limited by guarantee, registered in England and
Wales number 3880213. Registered office: 2nd Floor, One Aldgate, London EC3N 1RE.
Cystic fibrosis (CF) is a life-shortening genetic condition that slowly destroys the lungs and digestive system. 10,400+ people are living with cystic fibrosis in the UK, and each week five babies are diagnosed with the condition.
There is currently no cure for cystic fibrosis, and each week in the UK two people die of the condition.
What does the Cystic Fibrosis Trust do?The Cystic Fibrosis Trust is the only UK-wide
charity dedicated to fighting for a life unlimited by cystic fibrosis for everyone affected by the condition. We invest in cutting-edge research to develop improved treatments, drive up standards of clinical care at specialist CF centres and clinics
across the UK, provide trusted information, advice and support to those affected, and campaign hard
on the issues that matter.
Find out more by visiting cysticfibrosis.org.uk
HU
B1
9
Fighting for aLife Unlimited
presented to
for
Thank you for your contribution, which will help us invest in cutting-edge research, drive up standards of care, offer support for everyone affected by cystic fibrosis, and campaign for change. With your support, cystic fibrosis is beatable. date
Fighting for a Life Unlimited© Cystic Fibrosis Trust 2019. Registered as a charity in England and Wales (1079049) and in Scotland (SC040196). A company limited by guarantee, registered in England and Wales number 3880213. Registered office: 2nd Floor, One Aldgate, London EC3N 1RE.
cysticfibrosis.org.uk
Thank you!
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