There is a multitude of organizations working to support the cystic fibrosis community, as well as a variety of tools and information available to help people with CF not just live, but thrive.
Second Life & CF University
Second Life is a 3-D virtual world set up and monitored by the Boomer Esiason Foundation with virtual characters (avatars) in a cyber community. The online world allows people to socialize and communicate (via typing) face to face. CF University, located on Second Life, is an educational and resourceful tool that also allows people with CF to have social interaction. PLEASE NOTE: CF University is situated in the adult grid on Linden Labs Second Life. CFU is designed for parents, spouses and adults with cystic fibrosis. You must be over 18 years old to enter the CF University campus.
The Breathing Room facilitates candid and open communications between adults with CF, supports the development of a community of adults with CF, and provides education and insight for families, caregivers and medical professionals who impact the lives of those with CF.
CF Living is a program that provides educational materials and supportive resources to help people with CF manage their condition and take a more active role in their own care; it also assists caregivers take care of someone they love.
CF Roundtable is a newsletter for adults who have CF. It is published four times each year by the U.S. Adult Cystic Fibrosis Association. Most articles in CF Roundtable are written by adults who have CF.
There are few online venues where people with CF actually can tell their own stories and feel as if they are making real connections with other CFers. The Boomer Esiason Foundations Club Cystic Fibrosis bridges this gap, allowing them to open up and share some very personal stories with others who may be able to relate to their experiences. In addition, Club CF provides inspiration. Young adults with CF now can look to people in their 30s, 40s, 50s and even 60s who are living full lives despite the disease. CFers of all ages can go there to find people at the same stage in life who are finding ways to deal with similar challenges. And everyone can draw inspiration from the stories of caregivers, often the unsung heroes of the CF community.
CFVoice.com is an online community for people of all ages living with cystic fibrosis. A place for motivation, inspiration and connection to the CF community.
CysticFibrosis.com is a social health community of patients and families (more than 9,000 registered members) from all over the world, sharing their experiences with CF and gaining power over their disease and their futures. CysticFibrosis.com is a source of information, hope, and encouragement for patients and families affected by CF. The site educates in comprehensive and innovative ways: forums, chats, videos, newsletters, polls and blogs. CF patients, their families and caregivers use CysticFibrosis.com to connect with others sharing similar experiences: to seek hope, to guide each other through new experiences, and to comfort each other in times of grief.
Cystic Fibrosis Lifestyle Foundation
The Cystic Fibrosis Lifestyle Foundation assists in providing avenues toward healthy and active lifestyles through recreation, thereby educating adolescents and young adults with CF on the critical psychological, social and emotional connections between their lifestyle and their health.
Cystic Fibrosis Research Inc.
Cystic Fibrosis Research Inc. funds research, provides educational and personal support, and spreads awareness of cystic fibrosis. CFRIs vision includes informing, engaging and empowering the CF community to help all who have this challenging disease attain the highest possible quality of life. The groups web site includes information about research, events and resources of interest to the CF community.
CYSTIC-L is a free email service dedicated to the exchange of information and support specific to cystic fibrosis. Since 1994, CYSTIC-L has been sharing both casual banter about the varied impact of CF, as well as technical and medical information exchanges. There are more than 600 list subscribers sending a total of around 20-60 messages per day; a digest option is available which compiles messages and distributes them periodically during the day. Members include people with CF and those who share their lives: medical professionals, scientists, researchers, parents, grandparents, spouses, siblings, friends and significant others.
CysticLife.org is a social network just for the cystic fibrosis community. This positive, uplifting web 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 for others within the community by location, relation to CF, age and gender.
Heroes of Hope
Sponsored by Genentech, the Heroes of Hope program seeks to recognize and salute unique individuals with cystic fibrosis who strive to live full, productive lives and serve as role models to others, while managing their own healthcare needs. Nominate someone you know to be a Hero of Hope today.
Second Wind Lung Transplant Association Inc.
Second Wind Lung Transplant Association, Inc. was formed in 1995 by a small group of people who wanted to provide information about lung transplantation to others. The slogan Support through Service was adopted. Today, Second Wind is an international organization with over 400 members scattered throughout the United States and in Australia, South Africa, the United Kingdom, and Germany.