Why CFCommunity is needed.
Online contact is never going to be the same as meeting up in real life, but with CFCommunity we try to come as close to that as we possibly can. We can’t do this without your help.
Bring people affected by Cystic Fibrosis closer together on a global scale
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 what sparked our ambition to create CFCommunity.
How it all started...
The story of Sarah, Bowe, and many others with CF
We are Bowe and Sarah and we both have CF. Years ago we met at a summer camp for kids with Cystic Fibrosis.
Segregation was not a even a thing in those days, which is good because we’ve become close friends by being able to be close!
Once the segregation policy went into effect, we knew something huge would be missing for the new generation of people affected by Cystic Fibrosis.
The news that we could no longer meet in real life left us uncertain about the future, but also concerned for the next generation. This is when we realised that we had to create an alternative.
Hanging out online will never been them same as meeting up in real life, but with CFCommunity we try to come as close to that as we possibly can.
Where we are now..
CFCommunity is an officially-registered foundation in the Netherlands.
CFCommunity was founded by Bowe Frankema & Sarah Smit in 2013 in Lelystad, The Netherlands. By Dutch law our board consists of five people, including a secretary and treasurer (read more in our FAQ).
Thanks to the help of our family, friends, and many generous donations from our crowdfunding campaign, we kickstarted a (long) development process to build the code foundation and all the functionality a modern social network needs.
The community you’re seeing today is developed and maintained by people directly affected by Cystic Fibrosis and all of this is done on a completely voluntary basis.
Some of our volunteers are community hosts who help new people get familiar with the site, whilst others help with design, branding/communication and writing the code that keeps the site running.
CFCommunity is 100% dependent on donations. Our lovely donors recognize the impact of having an international community for those affected by CF.
There are more ways to donate....
Frequently asked questions
Absolutely! You can donate directly through a bank transfer! here are our bank details:
Name STICHTING CFCOMMUNITY
IBAN NL75 INGB 0006 4368 51
BIC INGBNL2A (only needed for transfers outside of Europe)
Yes we are! We’re officially registered in the Netherlands as a cause. Our board consists of:
Bowe Frankema (Director)
Marja Inpijn (Treasurer)
Tinke Claassen (Board Member)
Sarah Smit (Board Member)
Rick Inpijn (Board Member)
We have clearly defined goals for CFCommunity and give complete transparency on where our funding is spent on. We’ve declared to invest all of our funds directly into Cystic Fibrosis related activities. Primary this means developing and maintaining cfcommunity.net but in the future this could expand into projects that benefit those affected by CF.
Absolutely! If you’d like to donate to CFCommunity on behalf or in memory of someone you can do so easily via our donation form above.
If you make a donation on behalf of someone else we’ll send a nice eCard to that person letting them know you’ve supported our cause in their honor.
All Countries except the Netherlands
Not yet. Because our cause is registered in the Netherlands we’re not a US registered 501(c)(3) charitable organization. We’re not sure if it’s possible to get that done, so if you’re experienced in this regard we’d love your help to get the ball rolling 🙂
We’re working towards becoming an ANBI so that donations are tax-deductible and hope to have that sorted soon!
No, and we did that on purposee. We want to build a community by people with CF, for people with CF. This means that the decisions and features we have in mind for CFCommunity do not always line up with existing organisations.
A good example is our ambition to start something international. For a Dutch organisation that receives funding from people in the Netherlands this might not be something they would want to support.
We don’t want to compromise our ideas and visions for CFCommunity and that’s why we started our own foundation.
By becoming a registered cause we have the freedom to take CFCommunity in the direction where we as a community want it to go!
As one of our members said:
I would prefer it if I could speak to all my CF buddies in a separate environment. Not because I am ashamed, but simply because the world of Cystic Fibrosis isn’t always a happy one or one that is easily understood. I’d like to “protect” my friends and family from some of these things.
CFCommunity is sorely meant for creating a place just for people with CF, a place that can adapt to the very specific needs of the community, a home and meeting place on the internet. We have a strict no ads/sponsorship policy and what happens on CFCommunity stays on CFCommunity.
Absolutely! If you think you’d be a good fit for our team and would like to help us grow CFCommunity, start by creating your profile and getting familiar with all it’s features and getting to know the community.
Depending on your skillset you could help us with answering questions from new members, translating the site into (new) languages or writing articles for our online magazine.
If you have other skills like video editing, graphic design (social media) marketing or fundraising we’d also love your help. Finally if you are a WordPress Developer and would love to work on new features for the site, that’s definitely an option too!
In any case you can also directly reach out to us by getting in touch with us.
Get in touch!