Tuesday, July 17, 2012

My CysticLife "Job"

Here's another question I get asked quite a bit, and until now, have kept the answer between me and the person asking the question. I figured that it's asked enough though that I should just put something here on RSBR in case any of you are wondering the same thing.

I always hesitated talking about this publicly, because I don't want any of you thinking that I'm somehow self-promoting or asking you to give me a pat on the back. I don't want any of you however ever to think that I have any financial interest in bringing CysticLife to the community and want to make clear my motives - to make an immediate impact on the lives that were born with the same genetic disease that I was, no more, no less. Anyway, hope this clears some stuff up for some of you.

For you. CL is your "job" even though I feel sure you don't look at it this was. How do you make money from this? Do you take donations ? I'm sorry if too personal. You help so many with all of your knowledge and your responses are so quick - I was just wondering if donations are what keep it going?? 


CL is my "job" in that I devote well over 40 hours a week to it, but I do not make a single dime. In fact, my family "lost" money last year running CL.

CL has a for-profit arm (the website) and a non-profit arm (grant program and educational materials). Every dime we make through the website, promoting surveys, videos, etc, goes directly to our web developers salary. If we don't generate enough business to cover his salary, then we cover it.

For our non-profit arm, 100% of the money taken in goes to support our educational materials and grant program. We don't even allow any of the money to be used to run CL. We do take donations, however, due to an issue with our 501c3, we've had to freeze that for now. I pray we will be back up and running shortly.

Most of our donations came from private donors who appreciated what we're doing. I'm hoping that continues so we can continue supporting the CF community.

Comments (10)

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You have been a true inspiration to me Ronnie!!! Thank you for all that you do for the CF community! You are a true role model to others with this disease. Through this blog you have inspired me to actually start my own blog :) Come and check it out!

Believe it or not the Sharpe family is talked about at my household!!!
1 reply · active 663 weeks ago
I'll have to check out your blog now!! Thanks for the comment :)
For those of us who want to show our appreciation for Cystic Life with a donation, what's the best way to make that happen?
1 reply · active 663 weeks ago
As soon as we get our 501c3 squared away, I'll be sure to let everyone know. Thank you SO MUCH for your interest!!
I hope so too! You guys have had a huge impact on my life dealing with CF and how I handle situations surrounding my little ones CF. Helped me realize she doesn't need to be in a bubble just b/c she has CF. Most of my family knows you on a first name basis too :0) We love the Sharpe's around here! Thank you guys!!
1 reply · active 663 weeks ago
Had a huge smile on my face reading that. To know that I may have had a hand in preventing one more kid into the life of a bubble is all I need!!
I'd say you're making you goal! Cystic life has helped to connect so many people and give so many people (especially parents) hope!! You go Fibro!
1 reply · active 663 weeks ago
Thank you cyster!!
As you know Ronnie, I'm a big fan of what you're doing. For me personally as well as seeing how many people this site is positively impacting. I would have just as much respect if you were the programmer or held any salary-earning position in this organization for that matter. Keep doing good and I'll keep smiling.
1 reply · active 663 weeks ago
Thank you Jason, that really means a lot.

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