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The Respiralia Group is organising another edition of the ‘Charity Run against Cystic Fibrosis’ between El Molinar and Can Pastilla.
Marc’s story of overcoming adversity
Marc, a 23-year-old man with cystic fibrosis, today completed the 5-kilometre “Charity Run for Cystic Fibrosis” fun run, an event organised by the Respiralia Group between El Molinar and Can Pastilla to raise awareness of the condition and highlight the need for further progress in research and treatments for all people with cystic fibrosis.
Marc is unable to access the new CFTR protein-modulating drugs because of his mutations. These treatments are yielding very positive results in people with cystic fibrosis whose mutations allow them to produce this protein. Marc is among the 10 per cent of people with this condition who do not produce the protein.
971 people are supporting him in this challenge
Despite his respiratory limitations, Marc managed to complete the course, accompanied by family, friends and many people who wanted to show their support. This year, 971 people took part in the ‘Charity Kilometres against Cystic Fibrosis’, a non-competitive and inclusive run in which the aim is not to set times or achieve personal bests, but to share a challenge and raise awareness of people with cystic fibrosis.
Almost 500 people brought together by three small but significant figures
The event featured three young people with cystic fibrosis: Joan, aged 9; Ona, aged 4; and Lucía, aged 1, who together managed to bring together more than 480 people.
Each of them has set up their own support group, with more than 150 members in each case, demonstrating the ability of people with cystic fibrosis to engage family members, friends, colleagues and members of the public in a common cause.
This group participation is precisely one of the defining features of the ‘Charity Run for Cystic Fibrosis’: people with cystic fibrosis take centre stage and rally those around them to take part in a day of sport and charity.
Raising awareness of the work of the Respiralia Group
The initiative has also helped to raise awareness of the work carried out by the Respiralia Group with children and young people with cystic fibrosis in the Balearic Islands. This year, 15 of them took part in the event to demonstrate that ongoing work in the areas of physical activity and physiotherapy can help to improve their quality of life.
The exercise rehabilitation programmes, physiotherapy and osteopathy training, and psychological support offered by the Respiralia Group, together with a healthy diet and the medication prescribed by the medical team, are significantly improving these people’s quality of life.
Marc’s claim
For Marc, completing the 5 kilometres has been a particularly significant challenge. His reduced lung capacity means he has to use oxygen when exercising, but the work he has done with the Respiralia Group team has enabled him to tackle challenges that he was previously unable to meet.
According to Marc, “Having to exercise whilst on oxygen because of my reduced lung capacity isn’t easy, but thanks to the work of Joan, our physical therapist, I feel able to do things I couldn’t do before. Today I feel very pleased to have completed the 5 kilometres and to have received support from so many people. I hope the research projects currently underway can find an effective treatment for people like me who cannot take the new modulators“.
Institutional and business support
The event was attended by the Regional Minister for Health, Manuela García; the Regional Minister for Housing, Land Use and Mobility, José Luis Mateo; the Island Director of Tourism for Supply and Quality, Pedro Rosselló; the Director-General for Social Action and Territories at Palma City Council, Francisca R. Sampol; the Playa de Palma District Coordinator, Francisca Oliver; and the Director of the IME, David Salom, who accompanied the Respiralia Group throughout the event.
Representatives from the main sponsors of the ‘Charity Run for Cystic Fibrosis’ were also in attendance: Vertex, Linde Médica, Nura Hotels, Lantimar, Piñero and Logitravel.
Solidarity also with refugees from Ukraine
The Respiralia Group wanted to make the most of this day of solidarity to show, once again this year, its support for Ukrainian refugees in Mallorca.
To this end, it has invited the Amar Ucrania Association to set up two stalls at the event, where traditional products from their country have been on offer with the aim of raising funds to help more people.
A run to raise awareness of cystic fibrosis
The ‘Charity Run for Cystic Fibrosis’ is a non-competitive, inclusive run aimed at raising public awareness of this genetic condition and highlighting the importance of physical exercise, treatment and support for people with cystic fibrosis.
The ‘Cystic Fibrosis Charity Run’ is a non-competitive, inclusive run aimed at raising public awareness of this genetic condition and highlighting the importance of physical exercise, treatment and support for people with cystic fibrosis.
You can view all of Dmitry Botvinoskkyy’s photographs here. You can also view photos of the members of our team of volunteers:
#TogetheragainstCF
