Mission: The mission of Cystic Fibrosis Research Inc. is to fund cystic fibrosis research, to offer educational & support programs and spread awareness of cystic fibrosis.
What sets CFRI apart from other CF organizations is our commitment to provide educational and personal support to those living with cystic fibrosis and their families. It has been shown that informed and knowledgeable patients maintain healthier lives. We believe that the information and assistance that CFRI offers can help reduce much of the emotional and physical distress associated with this prevalent, life threatening genetic disease.
Programs: We fund cystic fibrosis research regionally and nationally and currently supporting 5 post-doctoral fellows and support 3 CF research projects at Stanford, UCSF, UCSD, CHORI, SDSU. We host an annual educational conference, attracting renown speakers and participants from across the country. We issue three newsletters per year, free of charge to over 15,000 constituents. We also hold an annual Teen and Adult retreat for the CF community. We provide on-going support groups for teens and adults with CF and for parents and caregivers of children with CF. We oversee and information based website which is accessed by over 5,500 people each month. A Caregivers support program has recently been launched for the CF community. We provide direct information and referral to all in our community. Educational materials are available and free to the community.
I have participated in CFRI as a client served, a volunteer, a Board member, and an advisor (not all at once) for the last 25 years. I have never encountered a group more passionate about their cause or more professional in going about achieving their goal of helping patients, families, and caregivers dealing with cystic fibrosis. The provide quality educational events and are always available to answer questions and help in any way they possibly can. They do a remarkable job fundraising, and ensure that the money raised is directed toward quality research, always directed at improving the lives of those with this devastating disease.