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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Birth Defects & Genetic Diseases Research, Health

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.

Community Stories

158 Stories from Volunteers, Donors & Supporters

1

Client Served

Rating: 4

This is an excellent tool for my son and our family in keeping up with all of the information that is very important to his care and future. This organization helps bring to light many daily battles we contend with and helps us get resources for issues and problems. We are fortunate to have this organzation for our issues and hope it continues to deliver hope for us and all families going thru this journey together.

Review from Guidestar

3

Donor

Rating: 5

CFRI is a group dedicated to research to help find a cure for Cystic Fibrosis. They are not as publicized as the Cystic Fibrosis Foundation and does not get as much money as they do. They do hands on research and are diligent to find a cure. I will support them until they can find a cure for Cystic Fibrosis. I have a daughter with CF, so their work is especially important to me.

Review from Guidestar

2 Jeanie H.

Volunteer

Rating: 5

As an adult with CF, I have found the CFRI programs and conferences have helped me immensely. The encouragement and overwhelming support that my spouse (nonCF) and I have received at the conferences always leaves us feeling more physical and mentally able to deal with this disease. We have developed lasting friendships through the support groups. The outstanding newsletter also keeps us abreast of research, treatments and assistance programs. Many thanks to CFRI.

Review from Guidestar

2

Client Served

Rating: 5

CFRI provides Research Grants, sponsors CF-ers and their families to attend a retreat and a national conference every year, provides group sessions for anyone who wants to talk about CF right here in the bay area or by SKYPE, and so much more....Withuout CFRI in our lives we would not be ready for whatever comes next in this disease. They are the lifeline for everyone in our community and abroad.

Review from Guidestar

2 Devin W.

Client Served

Rating: 5

My role with CFRI is more than just a client served. I've also volunteered there, and let me tell you do people at CFRI work hard. With educational events like the Education Conference that happens every summer, scholarship information and updates, and updates on research projects, CFRI has helped so many people cope with having cystic fibrosis in their lives. Without CFRI, my family and I would be so isolated and lost.

Review from Guidestar

2

Donor

Rating: 5

CFRI has given me a CF community. CF is not an easy disease, but CFRI has been it that much easier by letting people with cf get together to share their stories and to learn from one another. The retreat that CFRI puts on every year has been a great outlet for me to express myself and feel normal...no other organization in the CF community provides this type of event.

My foundation, Maggie's Miracle Makers is proud to be a donor to CFRI. I love giving back to an organization that has given me knowledge and power with my own disease. The conference that is put on by CFRI each year is a true testament to their greatness and to how wonderful their staff works each year to put on such an event. I cannot thank them enough for what they have given me and the people I have been able to connect with because of CFRI. This organization does so much for our community they most definitely deserve a prize for their hard work and dediation to this disease.

Review from Guidestar

2

Client Served

Rating: 5

When we received our daughters diagnosis, CFRI was there for us. They provided us information on the disease, but more importantly they connected us with people directly impacted by Cystic Fibrosis. This allowed us to find out first hand what life would be like, and how to best approach treatment. Because CFRI was there for us when we needed them most, we continue to fundraise and give back to them.

Review from Guidestar