Persons with Cystic Fibrosis (CF) between ages 11 and 25 who think they can help inspire and engage other young people living with CF are being invited to check out a new program from the U.K.’s Cystic Fibrosis Trust.
The Trust is reaching out to young people living with CF to offer suggestions on youth engagement and find new ways to get young people involved with the Trust’s work.
Using Hack it Up!, an innovative collaboration platform that enables crowdsourcing of great ideas from the CF community and beyond, the Trust is looking for younger supporters to share their thoughts on how to communicate effectively, suggest brands or celebrities they relate to, and generally help guide the Trust’s strategy for creating positive change in the lives of young people with CF and help the Trust innovate faster by putting people with CF in the driver’s seat.
The Hack it Up! community enables a crowd of hundreds to make suggestions, collaborate, publish ideas, have discussions, and provide feedback on various aspects of cystic fibrosis. Activities will be posted over the following three months that will address different aspects of living with and helping to beat CF, and this period may be extended if it is seen to be useful.
People who join the community are not obliged to actively participate, and may use a community name and avatar if they prefer, but it is hoped that they will find it interesting and rewarding to be part of a community where everyone is able to share their experiences, with the aim of helping everyone whose life is affected by CF.
As the ideas are submitted in an open community, anyone invited to participate in Hack It Up! is free to use or build on them. Hack It Up! is an open site, and the general public will be able to read any ideas or comments submitted. However, only people who have registered as community members are able to contribute.
Possible community projects could be to design an activity resource for people with CF, their families and friends, or paper-based like a book or leaflet, or digital like a video or social media channel. The Trust wants the community to establish partnerships with organizations like gyms, sports clubs and those who teach activity classes, and to inspire innovative ways to fundraise that are related to sports and activities.
Challenges for brainstorming on Hack It Up! include:
How to keep active when ill or in hospital? What do you carry on with and what goes out of the window? Does activity make you feel a bit better, and if so what type? What sort of activities that you haven’t tried might work well in these circumstances? Have you heard of others doing things that you’d like to try? What resources do you use in these circumstances and how do they help? e.g.: gyms, clubs, trainers, products, apps, games or information from web sites, books and leaflets from the U.K. and abroad.
Do you use any technology, devices or applications to record any measures of your health, activity or well-being? The proliferation of smartphones, tablets and home computers means an array of powerful tools are ever-present at your fingertips, and the Trust hopes that it will be possible to harness these technologies in pulling together useful tools and new advances to aid in monitoring and understanding CF. What technologies are currently useful to you; what existing tools could be applied to monitoring CF? How can this information be presented to CF clinicians?
Members are invited to share and discuss various different types of activity they participate in and how they affect their health or make them feel. What have you tried? What went well or not so well? What would you like to try in the future? Are there any barriers that would prevent you from participating? What resources do you use and how do they help?
Community members are encouraged to share stories and anecdotes about how to show CF who’s boss — experiences with daily treatments, monitoring health, motivation techniques, and other helpful activities such as exercise. Or just things that make people feel good or bad. Contributions are invited from people with CF as well as those who support them.
For more information, visit:
Cystic Fibrosis Trust
Hack it Up!