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We are Bowe and Sarah and were born with Cystic Fibrosis, a genetic disorder that particularly affects the lungs and digestive system.
Cystic Fibrosis causes constant lung infections and your lung capacity deteriorates over time. Most people with CF need a lung transplant later in life, but due to long waiting lists this often comes to late. The average life expectancy for someone with Cystic Fibrosis is 35 years.
During the last two years we’ve lost four friends due to CF. Five people in our group of friends have needed a lung transplant to stay alive. In short; Cystic Fibrosis sucks.
For the last few years we have been working on a project to help people with CF around the world: an online community and social network for people affected by Cystic Fibrosis.
People with Cystic Fibrosis are not allowed to have contact with one another. It increases the chance of infection and has the potential to reduce life expectancy. Online, however, we can interact and engage as much as we want. Online we can create a community and a support network. Online we can make friends.
Please take a few minutes to read about our story, which is just one of many similar stories. We hope that after you've read it you'll support cause, even if it's just through a small donation or sharing the campaign to your friends.
Living with CF
Imagine being born with a genetic disease that causes your lungs to fill, making it hard, sometimes impossible, to breathe. Imagine being susceptible to lung infections and a shorter life expectancy than everyone else. Imagine coughing attacks, feeling as though you’re drowning, regular hospital stays, and the fear of an uncertain future.
Now imagine that thousands of others also share this genetic disease but you won’t ever be able to meet with them in person. You won’t be able to get together to share stories, a shoulder, a helping hand, a hug, or build a community of support and encouragement.
Read more about CF on CFF.org
Being around people who truly understand you is important. This realisation is what sparked our ambition to create something for us; the Cystic Fibrosis community.
CFCommunity.net: a social network for people with Cystic Fibrosis.
The idea is simple: A social network for people with CF, by people with CF. We are immensely lucky that we have the internet, giving us a safe means for communication. The community will allow people with CF to share experiences and get support from others from all over the world. They can be part of a group of people that know what it’s like to have CF or be around someone who has it, without running the risk of the cross-infection.
It’s about being part of a group of people that know what it’s like to have CF.
It will not only be a place where you meet others with CF, it can also serve as the way for a younger generation to learn more about their disease through meeting kids who are in the same position. As someone who’ve had the luxury to meet others with CF in real life, I know how important this is.
On CFCommunity.net you can create a profile, join discussion groups, share CF related videos, earn rewards for achieving personal goals (like gaining weight, or taking your meds) and start a blog.
But it’s more then just a community for us; those born with CF. My parents, brothers and friends are also affected by CF. It has become part of their lives too, and I think having a place for them on CFCommunity is very important. This is why we’ve come up with several smart ways to bring community members into contact with people who are in the same situation, so they can share their stories too.
How we will make CFCommunity.net a reality
As I said in the beginning of this campaign, the idea of CFCommunity.net led me to pursue my career in web development.
Over the years I’ve built a career that allowed me to focus on creating large scale social networks built upon WordPress and BuddyPress.
Last year my business partner, Marshall, and I were hired to work on the Commons in a Box project. This software has one goal; Making it easy to create and maintain a social network for your university, academic commons or organisation. We will adapt this software and use it as the foundation for CFCommunity.
During the past few years I’ve spoken about building online communities at several conferences across the world. At these events I’ve met with other people using WordPress, and I’ve focused on learning how to build communities with the software.
Before I became a freelancer I built online communities for Sony Playstation, UbiSoft and a large Dutch social network (Xseno). It’s what I love to do most, and what I do best.
Besides my own experience I’m backed by some talented people who are helping me along the way.
Mason James - CEO of WPValet
Siobhan McKeown - Writer and WordPress Documentation team rep.
Tom Wilmot - Co-Founder of Human Made
Tammie Lister - BuddyPress Developer and Community Builder
Sarah Smit - Community Manager
Why are we asking for money?
We need funding to develop and maintain the community. This can not happen without money, that’s the really short answer. Here’s a slightly longer one:
Custom Development – 70% of the development is done by us in our free time over the last few year. But the remaining 30% of development has to be done by external developers, who have the knowledge and skills to create the custom functionality that will make CFCommunity unique. There are hundreds of development hours needed to finish the community.
Community Management: Building such a huge international community with only volunteers is not realistic, and thus the idea is to hire up to two community managers for the project; One in the EU Timezone and one in the US timezone. This will be a part-time position and will be done by someone affected by CF.
Besides that there are a bunch of other things:
- Costs related to administration and registration of CFCommunity as an registered cause
- Marketing/Advertising to support our launch and reaching our audience.
- Translation of the content.
- Keeping a buffer for unexpected costs related to development, hosting or anything related to our cause.
We aim to raise enough funds to make it through the first year or ideally longer without needing any extra funding. Long term we hope to create a micro-donation system for sponsors to help keep CFCommunity online and evolving through small donations. If we won’t reach our funding goal we have a back-up plan where we develop in phases and roll out the international community in a slower pace.
CFCommunity is registered as an official cause and all our expenses will be made public every year, as well as shared with our backers.
Answering some additional questions
Because we don’t want to turn this campaign text into a novel, we’ve published a lot of additional information about the project on our website. It will give you a detailed rundown of how your money will be used, how the project timeline looks and why Facebook sucks so bad. Visit the FAQ page or click on one of the questions below to learn more!
Let’s make it happen!
Hopefully after seeing/reading the story of us and our friends, you’re willing to support CFCommunity.
Last year Bowe's cousin gave birth to a beautiful girl who sadly also has CF. She’ll never be able to meet others with CF in real life and we know one day she’d like to meet others with CF. We want to create that place for her and everyone else affected by CF. How awesome would it be if she knew it was her uncle and his friends who made that happen?
We would all be extremely grateful and are very motivated to create something meaningful for everyone affected by Cystic Fibrosis. Please help us make it happen!
Bowe and Sarah
Every donation helps, no matter the size! If you're not able to donate at this time, share our story with your friends. If you know people affected by Cystic Fibrosis show them this campaign. Even if you're able to donate only a small amount, we'd be extremely grateful.