Finding community and inspiring action at Action for Pulmonary Fibrosis
In a time when we are sceptical and critical of social media it’s inspiring to find a space that is nurtured by an active community. A community which is driven by a shared purpose and whose members are there to support each other.
Social media is often a place where we find ourselves at moments of inaction but through its community Action for Pulmonary Fibrosis inspires people – through scrolling, liking and commenting – to get offline and do something.
Pulmonary fibrosis refers to a specific group of lung diseases thought to be affecting around 70,000 people in the UK and our charity exists to help support them. These diseases have a devastating impact on breathing and quality of life and the debilitating nature of these diseases means people become increasingly breathless. Their world shrinks, for some to a single room, and as a result many people turn online for information, support and, crucially, interaction. That’s why building a sense of community on our social channels has been so important.
Our Facebook page has over 5,000 followers, our posts reach between 20-35,000 people a month, and our followers are people of all ages, who are affected by the disease. It’s a platform caringly created and nurtured by my predecessor into a community of people who are caring for, living with, or grieving for a loved one who has lived with pulmonary fibrosis.
Inspiring offline action
So how does this sense of community that has been created online translate into offline action? Well, earlier in the year we had 100 new fundraisers sign up in January and February from social media as a result of the presence and community we had cultivated there.
We know that action inspires action and by our featuring many wonderful supporters running marathons, wearing purple, baking or organising events, others were inspired to take action and sign up! Patients and carers living with the disease are touched by seeing online, through our social channels, the energy, commitment and resilience that goes into fundraising as people wade through mud, run on the hottest day of the year or stand up in front of a huge audience and sing for them!
Through APF’s social media you see the huge appetite there is to help and a thirst for answers. More than that there’s a sense of energy, built up from anger and sadness which, because of the cruel nature of the disease, has no outlet. People find a place for it online.
A community can come together and survive anywhere and people can be motivated in the hardest of circumstances, and social media, at its best, is essentially that. It’s social. It encourages interaction and friendship. It helps people not to feel so alone. It forms communities and Action for Pulmonary Fibrosis, a patient driven charity, thrives through its caring community.
Bringing social to life, our followers:
You can see below by the number of times people have mentioned each others names that there is a sense of closeness and community. A powerful testament to how by spending time nurturing our online channels and sharing the successes of people in the community online, those who may otherwise have felt isolated are brought together and supported.
When the community comes together to support each other’s fundraising, support groups or general health.
When we feature research, it inspires hope
We try and feature our research, and shout about pulmonary fibrosis national awareness raising as much as possible as it gives hope.
When you inspire new fundraisers to get up and go…
Photo: Lidya Nada on Unsplash