IMPROVING THE LIVES OF ADULT CYSTIC FIBROSIS PATIENTS
This page provides access to online sites with information on cystic fibrosis and organ donation.
Cystic Fibrosis Resources
The primary online resource to whom most people are initially directed is the Cystic Fibrosis Foundation. The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high-quality, specialized care.
A great local resource is the UNC Adult CF Center. The UNC Adult CF Center was one of the first established adult centers and remains one of the largest. It has been a leader in training adult pulmonologists in the care of CF patients, and has been responsible for the training of many adult CF specialists across the country. Their goal is to work with you to achieve the best possible health and quality of life.
Another excellent resource is Cystic Fibrosis Research Inc. Cystic Fibrosis Research, Inc. exists to fund research, to provide educational and personal support, and to spread awareness of cystic fibrosis, a life-threatening genetic disease.
Specifically focused on adult cystic fibrosis patients, the CF Roundtable provides a source of information for CF adults regarding the basis, nature and progression of the disease, as well as the latest treatments and research to fight it. It also offers a forum for CF adults to communicate with each other.
Organ Donation Resources
Jessica believed strongly in the power of organ donation to change lives. Although this didn't work out for her, she was a registered organ donor in the hope that other may benefit from her passing. Today, well over 100,000 men, women and children are awaiting various organ donations in order to improve or prolong their life. Donate Life provides an easy way to register as an organ donor. Please consider doing so today!
Rock CF Foundation is a charitable organization founded by Emily Schaller that is also dedicated to increasing the quality of life for people with Cystic Fibrosis. Emily suffers from cystic fibrosis, and she and Jessica became good friends in Jessica's later years. Emily offers a variety of advice and products for those affected by cystic fibrosis via her website. Rock CF utilizes the arts, entertainment, fashion and fitness to support research initiatives and heighten public awareness in the fight against cystic fibrosis.
Wheelin with CF
Wheelin with CF is foundation established by Alyssa Magro to spread awareness about cystic fibrosis through the off road community, using her love of four-wheeling and her purple Jeep Wrangler. Alyssa was one of the first patients assisted by Spiritus Project in support of her double lung transplant in 2015. You can read more about Alyssa's story and her connection with Spiritus Project here or click on the link for the Wheelin with CF Facebook page.