Cystic Fibrosis Holiday Fund

Laurie Howard

Director

Mission

About the Cystic Fibrosis Holiday Fund At the Cystic Fibrosis Holiday Fund our mission is to provide much needed holidays and short breaks to children with Cystic Fibrosis and their families. All money raised for the Cystic Fibrosis Holiday Fund will go 100% back to children with CF and their families thanks to a generous annual donation that covers our running costs. What is CF? CF is one of the world’s most common life-threatening inherited diseases, affecting around 10,000 people in the UK. For the sufferer, internal organs, especially the lungs and digestive system, become clogged with sticky mucus making it hard to breathe and digest food. Daily intensive physiotherapy is necessary as is a strict regime of medication (taking as many as 50 tablets a day). For people with CF going into hospital for a few weeks every so often is the norm. Sometimes extreme medical intervention, such as a lung transplant, is necessary. CF affects different people in different ways and whilst treatments are continually improving, whilst 50% of CF adults are in education or employment and with CF sufferers even becoming international sportsmen (like Australian rugby star Nathan Charles), this isn’t the outcome for all sufferers. CF reduces lifespan considerably. Many people will live into their 40’s but far too many still die in their teens and twenties. This uncertainty can have a significant negative impact on the mental well-being of both the CF sufferer and their family. Children with CF figure out early in life that they will not have a full life span; they usually know other children who have died from CF at a young age and these issues can develop into psychological problems for the children, their siblings and the parents who care for them. Financial issues can be overwhelming for these families as the hours of intense daily therapy and frequent hospitalisations make it hard for parents to keep jobs. Children with CF living in the lowest income categories have a 44% increased risk of death. Holidays are often impossible to budget for, yet evidence is growing to show the value of a holiday for these families; the psychological uplift has a direct impact on the effectiveness of treatments and subsequent measurable health outcomes. What we do The CFHF is here to help these amazing families have positive experiences and make happy memories and we achieve this through our two grant programmes, Respite Break Grants and Family Revitalise. Respite Break Grants Our Respite Break Grants provide £350 for a child with CF to enable their family to plan a day trip or help with the additional costs CF will add to a family holiday such as oxygen for flights and costly medical insurance. Often these holidays and day trips would not be possible without our help. In 2018 we awarded 150 Respite Break Grants. Family Revitalise Family Revitalise is our programme of funded holidays made possible thanks to the generous donation of luxury accommodation from CLC World Resorts and Hotels. In 2019 we were given 50 weeks of free accommodation spread across resorts in Malaga, Tenerife, Scotland and Florida. This programme quickly fills up and we are currently looking for regional funding so we can book the 60 weeks of accommodation (approximate value £90,000) we have for 2020. As places are limited we target families who have not been able to take a break for some time, where finances preclude them from having a holiday and where the child(ren)’s CF has presented particular challenges in the last year. In some cases it will be the child’s last and/or only chance of a holiday. We only consider families referred by CF centres and we work closely with CF teams to select appropriate destinations and to ensure the children are fit for their break. The selected families receive a week of accommodation (two for Florida trips), flights, transfers and a small grant. We assist families in preparing for these holidays in many ways including having the confidence to travel with an ill child and travel with the vast amount of medication essential to maintain the health of a child with CF. Research has shown that these holidays help children with CF to stay healthier. Time again we hear from our families that these trips would not have been possible without our help and the excitement of planning for their break and the reliving of memories together is a high point of family life. Rebranding In our work with families we have found that there are gaps in the provision of key areas on non-medical support. After surveying our grantees and speaking to the CF community more widely, as well as CF professionals across the UK, the need for support around education was found to be significant. The CF Holiday Fund is looking at expanding its support to include school trips, exercise classes, communication with schools, understanding necessary absences, laptops for kids with frequent hospitalisations and assistance preparing Educational Health Care Plans (IHCPs). We are looking for help in rebranding the Cystic Fibrosis Holiday Fund to encompass the new programmes that will be offered. For more information please do get in touch and thank you for your consideration.

Category

Disability

Additional Information

The CF Holiday Fund request would fit within, Health, Disability and Children and Youth categories.

Help Wanted Ads

Feb 05, 2020

Rebrand for kids Cystic Fibrosis charity

Description

The Cystic Fibrosis Holiday Fund is seeking to rebrand to better reflect its current and upcoming programmes around education and well-being as well as the longer-running programmes for short breaks and holidays. Help and advice gratefully received.

Skills Required

  • Graphic Design
  • Concept Development
  • Branding

Posted on Nov 05, 2019

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