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2015 Top-Rated Nonprofit

Cystic Fibrosis Research Inc

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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

19 Stories from Volunteers, Donors & Supporters

1

General Member of the Public

Rating: 5

Amazing information in a constant clear description that I'm always sharing with groups and support it continuing. There are 70,000 X Family = Millions and CFRI Is a constant in helping. 65

2

General Member of the Public

Rating: 5

One of my favorite organizations! They do so much for the CF community, including providing a sense of community. There aren't enough words to say what they mean to me.

2 Sanjeev B.

General Member of the Public

Rating: 5

I found out about CFRI through a grandmother who was crusading for her CF striken grandchild. I attended 2 conferences in 2011 and 12.

This is one of the hidden gems, working relentlessly for the cause of CF. Their 2 day annual conference and camp are an amazing forum to meet, interact with the best minds in the business. I have learnt a ton from this organisation which I am sharing with other families as we all cope with the devastating effect of CF and hope for a cure one day.

Sanjeev Bode Dallas TX

1

General Member of the Public

Rating: 5

In 1982 our grand-niece was born and a few months later she was diagnosed with CF. At the time, life expectancy for those diagnosed with CF was in their mid-20s. Our grand-niece is now 30, married, and with a beautiful daughter of her own. The research CFRI does is priceless to the loved ones of people coping with CF. I hear lots of good things about CFRI from family members who have participated directly with major fundraising events and have served on the board.

2 Janice16

General Member of the Public

Rating: 5

CFRI has been a part of my life for many years now. My son, who is now, 19 years old was diagnosed with Cystic Fibrosis shortly after birth. Through CFRI, I have been able to educate myself and my son through newsletter and online video topics. They keep me abreast of the latest research and share heartwarming stories. The CF community benefits from CFRI even though we are a thousand miles away. Thank you CFRI.

2

General Member of the Public

Rating: 5

Cfri has done an outstanding job of keeping me informed of important information from the latest ground breaking research to a wide variety of upcoming events and activities. Cfri have gone out of their way on multiple occasions to answer my questions via a personal phonecall. I have not been only very impressed with what they are able to accomplish with such a limited staff but also very grateful. -Dave Pastush

2

General Member of the Public

Rating: 5

When I attended my first CFRI conference, I felt like I had come home. I was welcomed by a warm, caring, compassionate and friendly staff. I immediately knew that I wanted to become involved in this organization, which isn't easy to do while living in the Midwest. But, no matter how little I was able to do for them, the staff and volunteers were always appreciative; they always make one feel valuable. CFRI is the only venue where I'm able to hear speakers talk about the latest research as well as other topics of interest to those with CF. I've often told my husband that if we could afford a home in California, I would move there just so that I could participate and volunteer more with this most impressive association.

2 Jim_37

General Member of the Public

Rating: 5

CFRI is a real Godsend! Great group of dedicated professionals!

2 Eric22

General Member of the Public

Rating: 5

CFRO is a great resource for any new or longtime cystic fibrosis patient and family. They provide much needed information and support to the CF community.

2

General Member of the Public

Rating: 5

Cfri does monthly meetings which are live streamed so everyone can attend. Their yearly retreat changed the life of my daughter. Ty's nonprofit is amazing!!!

2

General Member of the Public

Rating: 5

I am the grandmother of two children who have cystic fibrosis. When our granddaughters were diagnosed with cf, I had no idea what it was or how it would affect their lives. CFRI has has been a wonderful resource for understanding the disease, as well as keeping up to date on the treatments that are developing.

2

General Member of the Public

Rating: 5

I have CF Adult, diagnosed in 2008. CFRI has been very informative and is up-to-date, always. Many friends prefer this organization for their efficiency and personal assistance over several organizations that assist Cystic Fibrosis patients. They are very prompt when responding to a question, they sponsor several informative workshops throughout the year that are on a patient/parent relevant and at the patient's parent level of understanding. This is extremely beneficial for information and expert care. They work very hard and are very dedicated to this serious illness and can make a difference in life or death. I would contact CFRI as my first choice for information and care.

Review from Guidestar

3 Sadie A.

General Member of the Public

Rating: 5

When I was born, my parents were told that I would not live to graduate from high school. With help from organizations like CFRI, I am a fully independent, 24-year-old college graduate. I participate in CFRI's "Mother's Day Tea" fundraiser every year to help raise much needed funds and awareness for CF. I have also attended several of the educational and supportive events hosted by CFRI. This organization makes an enormous impact in the lives of families affected by CF.

Review from Guidestar

3

General Member of the Public

Rating: 5

This past year I was able to attend the annual Family Education conference due to a generous grant from CFRI. Here I learned valuable information about upcoming medications and research in the CF field, I was able to meet with other CF parents to discuss treatments, medications, and just life in general about being a CF family. Vendors were available to discuss vest operations, pharmacies were on hand to talk about medications and treatments. I highly recommend attending this conference to any CF family. Thanks to CFRI for providing this experience - I hope to be able to attend annually!

Review from Guidestar

2

General Member of the Public

Rating: 5

My cousin has CF and ever since I was 16 I have been involved with CFRI with the tea, camp and the yearly walk-a-thon. They are wonderful with the research and support for those with CF and their families.

Review from Guidestar

3

General Member of the Public

Rating: 5

My husband and I became associated with CFRI around 1981 when we found out that our only child had CF. CFRI was of more help to us than the local and national foundations supporting and fund raising for CF even though I participated with them in their efforts. We got their newsletters, educational literature and I became a Mother's Day Volunteer for their annual Mother's Day fund raiser. In time, our daughter was accepted at Stanford University and we became more involved with CFRI, attending their yearly conferences and helping with other aspects of their programs. My daughter also volunteered her time. Although we eventually lost her, CFRI was there to console and help us and we have numerous friends we still stay in touch with in the organization. It's a wonderful charity and I'm still a Mother's Day Volunteer and will be doing it again this year and for as long as I can. What impresses me most about CFRI is that you know where your money is going and who is doing research on Cystic Fibrosis. You truly feel you are doing something worthwhile.

Review from Guidestar

3 Tom M.

General Member of the Public

Rating: 5

CFRI is a great organization for so many who have Cystic Fibrosis and their families. Helping to fund research to find a cure and helping CF individuals with College. I am individual who has CF as well and I greatly benefit from CFRI retreat in which many of us can be our self and learn from one another. CFRI is so good on so many levels and is vital to supporting us CF folks.

Review from Guidestar

3 Hayli H.

General Member of the Public

Rating: 4

Both my sister and I have Cystic Fibrosis and I regularly receive emails from CFRI updating me about new research and programs that are going on. I am always amazed about the lengths that this company goes to in order to serve the CF community and to better increase our quality of life!

Review from Guidestar

2 Pam G.

General Member of the Public

Rating: 5

Anyone out there researching fo Cystic Fibrosis and trying to find improvements for the lives of the people living with Cystic Fibrosis deserves 5 Stars!

Review from Guidestar