Help Build CF Community: A Social Network for People with Cystic Fibrosis

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.

This is the reality for those living with cystic fibrosis. People with CF are not allowed to have contact with one another. Because of a high susceptibility to lung infections, they can easily infect each other just by hanging out. Highly resistant bacteria can be shared between those with CF that can lead to serious declines in lung function and more vicious illnesses that are harder to treat, ultimately reducing life expectancy.

This is the issue being tackled by BuddyPress developer, consultant and community builder Bowe Frankema. Bowe lives with cystic fibrosis and has mounted a campaign to create a social network dedicated to bringing this community together virtually, since they cannot meet together in person.

We were able to catch up with Bowe and ask him some questions about this project, CFCommunity.net, what it will mean for the cystic fibrosis community, the technology behind it, and what the open source community has meant to him personally.

Tavern: When did it occur to you that BuddyPress and WordPress would be a perfect fit for the CF Community?

Bowe: The first time I visited the BuddyPress Community forums back in 2009. I already tried out BuddyPress, but wasn’t sure if it could do the job. The software was still in it’s early days and the learning curve was through the roof! I did have experience in web development and community building so I got just enough of it, to dive in deeper.

I visited the support forums to ask some questions, and was blown away by the community there. Seeing this group of people working together to create software that was free for anyone to use, baffled me. Where was the catch? Why were these people doing this for free?

BuddyPress introduced me to the concept of Open Source and working together on creating something that benefits everyone. As soon as I “got” it I never looked back and knew that I wanted to build CFCommunity on WordPress/BuddyPress.

Tavern: Will you be building / designing the site yourself? Or will you be getting a team to help you?

Bowe: This is definitely a team effort. It’s funny that I’m able to type that with so much confidence, because it took me a long time to get to this point. I had the crazy idea that a non-profit project could be developed, managed and funded by this one guy, who also happens to have CF and can’t even work full time. It’s funny how your ambitions can make you set these unrealistic goals. As soon as I started talking about CFCommunity to my friends, they had these amazing ideas on how to make it happen.

Registering as an official cause, doing a crowdfunding campaign and helping getting the word out, it’s all done with the help of the input of my friends. Especially Mason and Siobhan have been great friends and mentors!

If we reach our goal we’ll be starting the development fairly soon. We’re still looking for a BuddyPress/WordPress plugin developer and someone who’s experienced with WP/BP Theme Development.

Besides the geek stuff there’s a lot of work we need to put in building the community. Translations, finding moderators, writing quality copy and getting the word out. It’s going to be fun :-)

Tavern: What kinds of new plugins will you need to create to serve the CF community specifically?

Bowe: We have a few very specific plugins in mind that we’d like to develop for the community. Here’s some of them:

I’m in the hospital :-( – This is a button on your profile that you press when you’re in the hospital. You can put in your address + room number and your friends will get notified. They will then be able to quickly send you a physical get well card or an e-card.

Memorial Profiles – The world of CF can be very grim, and over the years we’ve lost some of our friends due to CF. We have created memorial pages for those we lost, where we share stories, pictures and memories. We’d like to have a place for this on CFCommunity. We have ideas for doing this in such a way that a memorial page remains private for a small group of friends connected to the person who passed away.

Donations / Supporter Sytem – A lightweight plugin that simply allows users to make recurring donations to our community. These supporters are automatically listed on a special page and have a special badge on their profile.

Cause/Organisation Groups – We’d like to give CF related causes the ability to create a group similar to a Discussion Group. The big difference is that they would be able to tell something about their cause. The biggest benefit for having these pages for CF related causes/organisations is making it very easy for our members to find places they could contact for information or support.

Welcome Messages – On CFCommunity we will have hosts who are welcoming our new members. In order to help new members we’ll automatically send them a welcome message in their native language by one of the hosts assigned to that country.

These are a few unique plugins, but a ton of time is also spent on integrating and extending existing plugins that are perfect for our cause. One of the things we’re most excited about is using the Achievements plugin to reward our members for things like taking their meds, gaining weight or exercising.

Tavern: If you’re able to reach your funding goals, how long do you think it will take to build out the new CF Community site? And have you thought about a stretch goal?

Bowe: We’re aiming for a launch at the end of spring. The last 30% is always the hardest, and we have quite a bit of challenges to solve. It’s not just a technical thing, a lot of things are related to community building and finding the right people to lead the way. We’re planning to write about this process in more detail as the CFCommunity comes closer to launch!

If we go over our funding goal one of the first things I’d like to do is create a similar plugin as Commons in a Box but then for causes. Basically it would be a plugin suite + theme that would allow anyone to quickly start a social network for their cause. I think it would be awesome to drastically lower the barrier for people to create these types of communities. I honestly believe WordPress is the perfect platform for these type of communities, so I hope we’ll get to that point after we’ve launched CFCommunity.

Tavern: How has being involved with the WordPress and BuddyPress community changed your life?

Bowe: Story time! Average life expectancy for people with CF is around 40, I never realized how much everything I did was influenced by this. I badly wanted to leave my mark on everything I did. I was driven by an unhealthy fear of missing out on life. My entire life I had been taking shortcuts to achieve as much as possible in the shortest amount of time.

This is something that I’ve heard from many of my friends with CF, we’re simply not allowing ourselves to plan a real future for ourselves. Often friends and family would praise me for being so driven and ambitious but I was driven by the fear that I was in the prime time of my life. I neglected my treatments, skipped my meds and was constantly asking too much of my body. I certainly wasn’t in the best state of mind.

Things changed when I met an old friend who strongly advised me to see a different doctor. He really helped me change my perspective on life and helped me to stay motivated.

I needed to start planning for the future, think long-term and manage my energy. Find things that would give meaning to my life but are actually achievable and do not have a negative impact on my health. Plan for the future. I decided that I wanted to plan a large part of my future around WordPress.

WordPress has allowed me to build my career doing the things I’ve always loved doing; being creative, working with people, and give weight to my work through meaningful projects .

I’ve made real friends through WordPress and most of these friends are now helping me with CFCommunity.

WordPress allows me to have an impact on others through my work. It has given me the chance to see the world through WordCamps and BuddyCamps. It allows me to stand on my own feet and move from a small city in the Netherlands to the amazing city of Berlin. It allows me to work in my own pace and from anywhere.

It’s an amazing idea that my work has impact on others across the world, and I have WordPress and it’s community to thank for it.

Tavern: What is your ultimate hope for this community, on a heart level, where do you want it to go? In what ways do you hope that it will improve the lives of people with CF?

Bowe: When I was twelve my parents heard about these summer camps for kids with Cystic Fibrosis and thought it would be a good idea to sent me there. Those weeks have taught me more about living with CF than any doctor, family member or book could ever tell me. For seven days a year I would spent time with kids who truly understood what it was like being different.

While I was running around on the field playing a game of soccer with the well kids, we had ill kids, those who were sick at the time, cheering for us on the side of the field with IVs in their arms. I learned to accept CF as part of me, and be grateful that I was doing so well compared to others.

The idea that kids who are struggling with coming to grips with their Cystic Fibrosis, would never be able to experience what it was like to be accepted and understood in such a profound way really got to me.

So my ultimate goal with CFCommunity is to create something that could help people affected by CF to go through life a little easier. Last year my 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 I know one day she’d like to meet others with CF. I 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 who made that happen? Being in a position to do these things is proof that I made the right decision to make WordPress such a big part of my life :-)

Help Make the CFCommunity a Reality

The project has already garnered the backing of some serious talent, including Mason James, Siobhan McKeown, Tom Wilmot, Tammie Lister and Sarah Smit. The campaign is also offering a number of awesome WordPress perks from companies like WP Remote, WP Valet, SiteGround and Human Made.

Those involved in the WordPress and BuddyPress community are in a unique position to help make a difference in the lives of those impacted by cystic fibrosis, whether it’s through support, a plugin donation, getting the word out or helping to fund the project. If you want to get behind this project to build CFCommunity.net and help Bowe change the world, visit their IndieGoGo Campaign.