The 2016 STRIVE for CF awards recipients are four exceptional organizations committed to supporting people affected by CF. In recognition of their novel and innovative solutions to the unmet needs of the CF community, the groups were awarded grants to enable them to deliver projects to benefit those affected by CF. The details for each of the four organizations and their projects are listed below. Please join in congratulating them and their tireless contributions.
Cystic Fibrosis Ireland
Exercise and physical fitness is of extreme importance for people with cystic fibrosis (CF). It not only increases lung capacity and facilitates airway clearance, which complements patient’s treatment, it also preserves mental well-being and quality of life. In order to alleviate the financial burden on individuals and families with CF, and to encourage and facilitate people with CF to increase their physical fitness, Cystic Fibrosis Ireland (CFI) initiated a pilot Exercise Grant Scheme in 2009 to provide financial assistance for gym membership fees, purchasing home exercise equipment and fitness lessons.
Due to the positive feedback received from the pilot scheme and the growing scientific evidence supporting physical fitness for people with CF, Cystic Fibrosis Ireland has continued to support this grant scheme, through which approximately 1,300 grants have since been awarded to members! The STRIVE Award and the grant money will be put towards ensuring this scheme can continue to provide incentive and financial support to encourage and promote people with CF to exercise.
Cystic Fibrosis Ireland was established in 1963 and is one of the oldest and widely recognized patient advocacy organizations in Ireland. The organization has played a crucial role in improvements in the care afforded to people with cystic fibrosis and continues to work relentlessly to reach international standards of care and to improve the quality of life for people with cystic fibrosis in Ireland.
Cystic Fibrosis Trust UK
Research carried out for the UK’s Cystic Fibrosis Trust found that there is a marked increase in deaths in the late teens and early 20s and, whilst the reason for this is not totally understood, research shows that a decline in health is often associated with the move from pediatric care to adult care.
This period of transition can be daunting and stressful for young people as they become primarily responsible for managing their own treatment and care, and can lead to a lack of engagement with crucial interventions, such as daily physiotherapy and exercise, as well as non-adherence to their treatment regime, which can lead to irreversible damage to health.
In order to support young people with cystic fibrosis (CF) to live well during adolescence and make a healthy transition into adult care, The Cystic Fibrosis Trust has created a brand new post of a Youth Empowerment Officer (YEO), to engage with young people with CF to establish exactly what support and information they need, when they need it, and the ways in which they would like to access it. The STRIVE Award will go towards supporting the work of the YEO, Holly-Rae Smith. In her first year in the post, she will be prioritizing the establishment of a Youth Advisory Group, exploring the use of new technologies, working towards the creation of resources to support young people with CF through the transition from pediatric to adult care, and appointing Youth Ambassadors.
The Cystic Fibrosis Trust is the only UK-wide charity dedicated to fighting for a life unlimited for everyone affected by cystic fibrosis. The Trust’s mission is to create a world where being born with CF no longer destroys lives, when everyone living with the condition will be able to look forward to a long, healthy life.
Lega Italiana Fibrosi Cistica Onlus (LIFC)
In cystic fibrosis (CF), remote monitoring of some physiological parameters, such as lung function, transcutaneous oximetry, respiratory rate and heart rate, allows the early detection of respiratory disease worsening (often determined by the onset of a pulmonary infectious exacerbations) and enables healthcare professionals to quickly establish the appropriate therapies needed. Telemonitoring of these parameters can now be easily done in the comfort of a patient’s home, by the patient, and the data can be tracked by the CF center. This is particularly helpful for patients waiting for a lung transplant, which can often entail a wait of several months – through the remote monitoring, the patient can wait for the transplant in his own environment surrounded by family, improve adherence to treatment by the self-empowerment of interpretation of spirometry and oximetry values, reduce the risk of cross infection and reduce the costs of long-term hospitalization. Telemonitoring is also very useful to patients who have undergone a lung transplant as the post-transplant survival is linked to a timely identification of the complications highlighted by the worsening of respiratory function.
LIFC has initiated a pilot telemonitoring project with 30 patients treated at the CF centers in Rome, Verona and Potenza. The innovative nature of the project and the good results reported so far have led to a proposed extension of the project to 40 patients in the Italian region of Lombardia in the delicate pre- and post-lung transplant phases, which will be supported by the STRIVE Award grant.
LIFC is the only national association in Italy to take charge of all aspects of the life of patients with CF and of their families, providing social and legal assistance and promoting research to improve the early detection, treatment and rehabilitation. LIFC represents 18,000 people affected by this condition (approximately 6,000 patients and their families). LIFC founded the European Institute for Research on Cystic Fibrosis (IERFC) in 2005 to promote and carry out research with the goal of identifying new therapies with clinical relapse in the short to medium term.
Swedish Cystic Fibrosis Association (RfCF)
Physical exercise is an essential part of keeping cystic fibrosis (CF) under control and the team at the Swedish Cystic Fibrosis Association would like to promote this by hosting a Cystic Fibrosis Olympics. The CF-Olympics will take place at an outdoor track-and-field stadium, with events in different disciplines and age groups for CF patients and relatives to take part, both individually and as teams. The grant from the STRIVE Award will be used for the organization of the event.
The CF Olympics will be an opportunity to bring the CF community together and strengthen relationships — in fact, this would be the biggest coming together of the community in Sweden in more than 15 years! The event will also help raise awareness of CF in Sweden and show that patients with CF can live a fully functional life. The CF Olympics will be held in memory of the late president of the Stockholm CF Association, My Lindahl, who initiated the idea of the CF Olympics.
The Swedish Cystic Fibrosis Association (RfCF) was formed in 1969 with the purpose of facilitating, assisting and improving the situation of people with cystic fibrosis or primary ciliary dyskinesia (PCD) and their relatives. The national association has approximately 2,600 members, made up of people with CF and PCD, their families and others with an interest to support RfCF. There are 15 CF-associations operating at the regional, county and local level within the framework of RfCF and RfCF cooperates with the specialist teams available at the CF centers in Stockholm, Uppsala, Gothenburg and Lund.