In March 2009, Ronnie Sharpe, a 30-year-old with cystic fibrosis (CF), started to blog about his life with CF. The goal of his blog? To hold himself accountable in his exercise routine, meet a handful of CFers, and hopefully inspire a few people along the way, but his online journal accomplished something else. As his blog grew in popularity and he spoke with more CF community members, Ronnie quickly learned of the need in the community for a positive place where they could ask questions, post their thoughts, communicate with one another, and feel uplifted. This discovery got Ronnie’s entrepreneurial juices flowing, and he decided to bring the community what it needed. Ronnie recruited a team of people who have all been personally affected by CF, consulted CF community members on their needs, and after nearly a year of development, CysticLife.org was launched.
Launched in January 2010, CysticLife.org has become the social network for the CF community.CysticLife.org has rapidly grown to over 1400 members representing all 50 states and 36 different countries. In its short life, CysticLife.org has over 355,000 hits. This positive, uplifting site is the central location for the CF community to share tips, questions, ideas, experiences and encouragement. Members can maintain a profile, post blogs, ask and answer questions, directly contact one another, and search others within the community by location, relation to CF, age and gender.
Here are a few things that have been said about CysticLife.org:
“For all that are dealing with CF for the first time, CysticLife is such a blessing. I wish CysticLife had been around when I first heard those words "cystic fibrosis"...Dealing with CF alone is a scary place to be and now no one has to experience the CF life alone.”
“This is a big breakthrough with CF websites.”
“I liken (the site) to sliced bread. How in the heck did we live without it before?”
“This is a wonderful place for anyone who’s life has been touched by someone with CF! It’s refreshing to see the questions and comments posted by everyone and the honesty that comes with them is courageous.”
JOIN TODAY to see first hand what great things are happening on CysticLife.org!
For more information please contact Ronnie Sharpe, ronnie @cysticlife.org or Amanda Melin, amanda @cysticlife.org.
