Who we are
- We are a small voluntary charity working with communities across the UK to raise awareness of cystic fibrosis (CF) and funds for research into a successful treatment for CF and provide support to the CF community.
- We believe that everyone with CF should have the absolute best chance in life.
- We are supporting research into gene therapy to help all affected by the condition.
- New treatments are coming to clinic to help some with CF; however, we believe that no one must be left behind in the search for a treatment that will help all, regardless of gene type.
- We deal directly with the scientists to ensure that any money raised is spent on research.
- Going forward, as life expectancy increases within the CF population, there is a need for further support.
- We will liaise with CF clinicians and the CF community to support where we can.
- Around 10% of the CF population have no access to new modulator therapies.
- The research we fund, if successful, has the ability to treat all CF gene types.
- We respect and value each and every person who chooses to fundraise on our behalf to support the CF community and we will try to provide as much support as we can for your event/ fundraiser.
What is Cystic Fibrosis
- Cystic Fibrosis (CF) Is one of the UK's most commonly inherited life limited conditions affecting around 10,000 people in the UK.
- 1 in 25 people In the UK carry the faulty gene that causes Cystic Fibrosis. CF can't be caught or developed.
- For people with Cystic Fibrosis, cross-Infection can be very harmful and poses a particular threat. This is why people with CF should not meet face to face.
- CF affects mainly the lungs and digestive system, clogging them with thick sticky mucus.
- Treatments must be carried out every day and include a cocktail of drugs, physiotherapy, nebulisers and frequent hospital stays.
- There is currently no cure for CF but with your help that can change.
The Story Behind our Logo
The butterfly is a delicate creature and is a perfect representation of the delicacy of the lungs when affected by cystic fibrosis. Also, the butterfly represents healing/ freedom of spirit/ transformation and purity – all of the positive attributes associated with finding a cure for this cruel condition.
Most people are surprised to learn that ‘cross-infection’ (the sharing of harmful bugs between cystic fibrosis patients) is a major factor in the management of the disease. As a result, any two people with cystic fibrosis should not be within the same vicinity as each other in order to prevent the sharing of these harmful bugs. Therefore the designer thought it would be particularly poignant to incorporate something personal from each of the four people known to the charity who are living with the condition. As you can see, a fingerprint from each person has been brought together to form the shape of the butterfly – each one different but each share the fight against this life limiting, genetic condition and a combined hope for a cure.
Lastly, our logo does exactly as it says on the tin – we’re ‘FUNdraising for cystic fibrosis’ and FUN is at the heart of everything we do.
Why we're raising money.
- Work by the Gene Therapy Consortium (GTC) has shown that a modified virus Is a safe and highly efficient way of delivering the CFTR gene and a single dose of this treatment may improve lung function for many weeks or months meaning much less time spent on treatment.
- The GTC has recently signed a deal with a multinational pharmaceutical company to help push the product towards CF patients as efficiently as possible.
- Trials will begin in the UK in Summer 2024.
- This is very encouraging and exciting, but the GTC continues to need to fund its own team, which Is why it is so grateful for any funding that is raised by Flutterby FUNdraisers for Cystic Fibrosis and their supporters.
- Going forward, as life expectancy increases within the CF population, there is a need for further support.
What we have achieved with the help of those who make donations.
- Just under £500,000 funding given to Gene Therapy Consortium to help with research.
- Sponsored a scientist.
- Purchased medical equipment for a CF unit.
- Purchased fridges for inpatients to use in a CF unit.
- Part funded a wedding for a CF patient who was receiving end of life care.
- Provided support to parents
The future of CF
- There have been transformative changes for people with CF due to new treatments now available in clinic.
- Treatments are not suitable for all genetic variants (there are an estimated 2000 different mutations in 6 different classes) and for some, there will remain a need for improved treatments.
- Research is now focusing on those who do not have access to modulators and to prevent long term lung function decline.
- As people with the condition, additional support will be needed.