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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

45 Stories from Volunteers, Donors & Supporters

1

Client Served

Rating: 5

I am the past Director of Research Development at Children's Hospital Oakland Research Institute ( CHORI). I have had first hand experience with CFRI's incredible support of our research scientists and the Cystic Fibrosis lab. Throughout several years, CFRI continued awarding grants to our CF scientists, helping them carry on with their research during challenging times when the NIH drastically cut their research budget. Furthermore, CFRI , their Executive Director, CFO and Board of Directors jointly assisted CHORI with its Summer Internship Program. This is an educational program that selects/admits high school and college students interested in pursuing a career in research, healthcare and/or science. Many of of thecstudents are under- resourced and need help with a stipend for transportation and meals. This was another program that NIH used to generously fund in the past but cut back in 2014. Our good friends and supporters at CFRI came to aid the CF lab. CFRI's generosity allowed Chori scientists admit the students who actually have CF or are from families with CF determined to make an impact in curing this life threatening disease. These students are mentored and educated hands on by scientists. They work on real projects and at the end of the course they make presentations to the entire team of investigators at CHORI+ like any PhD, they produce and create an abstract of their work. Throughout my tenure at CHORI,our CF lab received mental and monetary support from CFRI. Additionally, CFRI awarded one of CHORI's CF scientists with their annual recognition award.

1

Client Served

Rating: 5

Great non-profit, puts money towards cf education and research.
Wonderful!

1

Client Served

Rating: 1

Their mission statement is a good one, but not all of their employees abide by it. Their director couldn't spend 10 minutes to fix a mistake to help someone in the CF community.

2 Jereme P.

Client Served

Rating: 5

I have been working with and served by CFRI since I was 7. They are a great non-profit that makes sure to put the people they serve before the "business." They make sure to have clients on the board so that the client point of view is always being voiced. At first I was served by them mainly because of the wonderful camp they held every summer for kids with Cystic Fibrosis and adults with CF to mentor the children. As I grew up the camp changed to a Retreat where teens and adults could share their experiences and learn from each other. It is one week where we are surrounded by others just like us. It is such a great experience. Also as I grew up I was asked to speak once at the conference that is geared more towards professionals and parents to a degree in the field of care of children and adults with CF. Also those that are currently researching items that could help the CF community. Often it is the researchers themselves that are supported by CFRI's grants. I have used the other CF non-profits and they all do some good for the CF community but in my opinion CFRI does the most for the CF community with what they have.

Previous Stories
2

Client Served

Rating: 5

I have experience with both CFRI and CFF and I would recommend CFRI any day of the week. They truly care about the CFer and our well being. They do whatever they can at anytime for anyone effected by CF. I have been associated with CFRI in some fashion now for over 25 years. They sponsored the CF Camps I went to as a kid, and then the Adult Retreats as I got older. They also sponsored the CF Conferences for not only those with CF but also our families and doctors. I have had the pleasure of speaking at the Conferences and they are highly informative and also an eye opener to many of the professionals there. The Retreats are great places of support for those with CF and our loved ones. Because of the Retreat my wife has had lots of support of others that have dealt with having someone with CF they love. She knows so many more people she can go to for advice because of CFRI. If it wasn't for CFRI most CFers would never get to meet others with CF face to face any more. CFRI not only makes sure that they support research but they actually support those of us dealing CF day in and day out.

2 Darlene Batchelder

Client Served

Rating: 5

Our son was diagnosed with cystic fibrosis just before his first birthday in 1989. Our doctor immediately referred us to CFRI as one of the few organizations committed to patient/parent education and improved care. I believe that the information I learned over the years, attending conferences and over the table as a volunteer packaging Mother's Day Tea invitations or processing donations, has kept my son in good health. Through CFRI, it's events and newletters, I was always up to date on the latest therapies and research. I was constantly heartened by the new of amazing research going on around the world. I was optimistic, as a result, that with commitment, discipline and good care my son could live a full life. He is now 25, working full time at a job (with insurance!) he enjoys, has purchased a home, and best of all lives independently and stays well. I'm convinced this would not be the case without CFRI, an extraordinary resource for parents and people with CF.

Previous Stories
2

Client Served

Rating: 5

My son, diagnosed with cystic fibrosis at one, is now 23, holding down a demanding full time job, owns his own home and is healthy for someone with CF. I am crystal clear that this would not be the case had it not been for a long time connection with CFRI! This organization bridged the information gap that Stanford Hospital and CFF could not. They provided regular opportunities to brainstorm with other CF parents to discover what works, a newsletter that provides the latest on CF research, and a sense of a wider community supporting us as we raised our son. I can't begin to imagine life without CFRI, its many volunteers and donors (individuals and drug companies). As a result of my involvement with this organization I was an educated parent, a powerful advocate for my son's care, AND I had a sense of possibility and hope without which we would have suffered mightily as a family. I cannot acknowledge this organization enough - there aren't enough good words to describe the dedication and contribution of this organization to our lives.

Review from Guidestar

2 Brindie G.

Client Served

Rating: 5

This group of amazing people are working very hard to find a cure and save my 11 year old sons life and the lives of so many others! This research is so important to the CF community. This organization raises funds desperately needed to help people with CF to stay alive as well as something most of us do everyday without thinking anything of it, breathe! This group does wonderful things for the people with CF and their families, it has given us hope! They have raised so much awareness about the disease, so many people whom were not aware of CF are now aware of it and are now helping us work to find a cure for our loved ones. We would by no means be where we are in the CF world without the help from all of the donors and with out the resources from our donors to allow the amazing research teams to help find all of the new and wonderful treatments they have discovered while working to find a cure! We need them to continue to be funded so they can continue to save lives! My son, Carson, depends on them! The entire CF community and their families depend on this organization! They are the reason we have came so far! My son will be 12 in September, it is unbelievable how far the treatments, life expectancy, and research has came in just my sons lifetime! We are the closest to a cure than we could have ever imagined just 10 years ago! And for us to make CF stand for "Cure Found" and not Cystic Fibrosis, we need to keep up the research that this nonprofit organization works so hard on! This organization has changed my son's life, my life, my families life and so many others lives in such a positive way, the leaps and bounds that have been made over the years would be no where close to where they are now without this organization! Thanks for all you do to help my son and others to live and "breathe easy"!

3

Client Served

Rating: 5

CFRI has a wonderful history of helping people who have CF, their families and their caregivers. Their educational conferences are outstanding in their content and participation. As one of the older people who has CF, I really appreciate all they have done and are doing for those who are touched bu CF.

2

Client Served

Rating: 5

The staff at CFRI have one consistent passion: serving the cystic fibrosis community. This is evident in everything they do - the educational webinars they produce, the conferences they sponsor, the medical research that they fund. Unlike many other nonprofits that seem unfocused, CFRI is lean, organized, and effective -- an almost business-like model (with a big heart!) that allows them to focus on their core competencies.

2 jbstockings

Client Served

Rating: 5

Having a son with cystic fibrosis, I always look to CFRI for the latest in research. They come through time after time.

2 Jen E.

Client Served

Rating: 5

As an adult with CF, this organization has helped me tremendously with learning more about the latest treatments and helping me feel connected to others with CF.

1 Victoria18

Client Served

Rating: 5

CFRI has been an integral part of my life and that of my family since I was diagnosed with Cystic Fibrosis at 22 months old. Their dedication to collecting and proliferating knowledge on CF as well as funding the research that is vital to an eventual cure is essential to helping those with CF function in their daily lives and live with hope that one day CF will be a distant memory. Their executive director, Carroll Jenkins, is possibly the kindest and most compassionate woman I've ever met, going out of her way to make personal connections with individuals with CF and their families and help them in every way possible. I just can't speak highly enough of this organization.

2

Client Served

Rating: 5

We are so thankful for CFRI. They are on the cutting edge of research for this horrific disease, and yet have the time to make a personal difference in the lives of so many patients!

2

Client Served

Rating: 5

Too much to say about CFRI. They bring about great fundraisers that raise money, awareness and passion. They help to fund the clinics that give our CF children the care they need to become CF adults. Couldn't do it without the CFRI!

3 Rachel60

Client Served

Rating: 5

My daughter has CF. We don't live in CA, so I am especially grateful for all the work they do and that they make workshops and talks available online. They are very informative and help us greatly, both in our daily lives and keeping us in the loop with progresses made. Thank you, CFRI!

2

Client Served

Rating: 5

CFRI transformed my life 22 years ago when I first walked through its doors. I'd be dead without the knowledge and social support i've gained through the years from CFRI. I learned more about how to live with CF from their education activities than from all my health care providers together, and more than any average CF Education Day at my hospital. The Annual National Family Education Conference is like no other--- a truly remarkable place to learn about research, hope, and gain support from people like me. I became a scientist because of what I learned at CFRI. And the staff is exceptional. So are the volunteers whose love, support and compassion have lifted me up in the most difficult time. The staff is made of fine human beings with ethics, integrity, determination, compassion and transparency. No one receives half-a-milion-dollar-plus salaries plus bonuses from pharmaceuticals. This is honest to goodness non-profit at its best. Their mission to fund research occurs at a grassroots level and they make an effort to inform funders about what's going on. The CFRI Retreat offers the only CF educational event for CF teens and young adults-- with the safest possible cross infection protocol. They recognize that isolation and depression is more damaging that a tiny risk of cross infection--- which is minimized to the greatest degree. Carroll Jenkins is a remarkable executive director, who treats each person with CF and their family as if they are the only ones in the world with CF. More importantly, she inspires hope and makes me believe they are all working to help me thrive with this illness. I highly recommend CFRI and give it five stars.

Previous Stories
1

Volunteer

Rating: 5

I've been part of CFRI for 20 years. I was a scared and lonely college student when I first met the staff at CFRI who welcomed me like family. They taught me more about managing my CF than what my doctors ever taught me. Mostly they provided supportive education and resources, as well as a network of friends at their educational camp, retreat and conferences, who uplifted me through the years and gave me confidence that I could get through this disease. CFRI offers the personal human touch and everyone on staff truly CARES about the lives of people with CF. I have volunteered for their Board, Camp, Retreat, Conference, and other committees. They use their funds very responsibly and the staff works very, very hard to raise funds for research, and for programs that directly impact families. I have such confidence in this organization so fully, that I've been moved to dedicate my time, energy and life to serving people with CF through CFRI. This organization is smaller than the CF Foundation and wants a cure to be found just as much; but CFRI is much more engaged in the lives of people fighting CF every day-- today.

Review from Guidestar

2

Client Served

Rating: 5

CFRI has a booklet called "Cystic Fibrosis in the classroom" that was instrumental in helping me communicate the things my daughter needed before entering kindergarten. Ive read similar pamphlets and this one was written so much better. Also the person I spoke to was very informative, providing me with further materials and getting them to me 2 days later!

2 Anabel

Client Served

Rating: 5

I have cystic fibrosis. When I moved to the San Francisco Bay Area 20 years ago, CFRI became my second family. The volunteers and staff are personable, loving , compassionate, knowledgable about CF and incredibly resourceful and supportive. Twenty years later, I can honestly say I would not be alive without CFRI- they have taught me so much with their annual family educational conference (things not even my doctor knew) and have offered an invaluable number of skills ,wisdom and emotional support during their support groups, educational seminars and annual summer retreat for people living with this very challenging disease. CF remembers those we have lost, supports those struggling with the emotional and physical aspects of the disease, and inspires hope by funding critical research to find a cure. No other existing CF non-profit organization has supported me in any way CLOSE to the way CFRI has. Please support CFRI - unlike other national CF organizations, it is not just about fundraising and research for cures that will come decades from now; it is about supporting families in the here and NOW dealing with ALL aspects of living and surviving CF.

Previous Stories
1

Board Member

Rating: 5

I have been a CFRI Volunteer, client served , professional in CF, for over 10 years. CFRI has been a gem in my life and is truly one of the reasons I am still alive with CF. It has provided me a home away from home, with wonderfully supportive staff, volunteers, services and most of all HOPE with its funding of critical research and its sharing of crucial knowledge and education needed to fight this challenging disease. CFRI is unique from other CF organizations by its personal nature, its grass roots ability to cater its services to those living with CF NOW, providing emotional, social, psychological and practical support to families and patients living with CF,while doing an excellent job of fundraising and supporting vital CF research that will someday improve our prognosis. For over 20 years CFRI has beckoned me to become involved and stay involved and I cherish this organization deeply.

Review from Guidestar

1 levygang

Client Served

Rating: 5

CFRI has been one of the most important resources in our lives. As a mother of a child with CF, CFRI has provided more intelligent information on care, medical options, and all around tips on how to live with this horrible disease. I am so grateful for their existence!

Previous Stories
2

Client Served

Rating: 5

As the mother of a daughter with Cystic Fibrosis, I can't begin to thank CFRI for the support it has given to my family and the CF community. The level of information and support for the entire CF community is outstanding. I am so grateful.

Review from Guidestar

3 Jo__5

Client Served

Rating: 5

My son was very sick for 5 or 6 years and the doctors at Children's hospital must have tested him for everything known to mankind. Nothing ever panned out. Then they decided to test my son for Cystic Fibrosis. That turned out to be the problem. We were devastated. We were searching for an answer with a solution, we found Cystic Fibrosis instead. Since my son started going to see the doctors at the Shreveport Cystic Fibrosis center, his health has improved, markedly. Instead of 6 to 7 hospital admissions a year, he has not been admitted in over a year. Because of Cystic Fibrosis Research Inc and my son's Cystic Fibrosis Care Center, we have hope for the future. A future with many years of accomplishments that would not have been possible just 40 years ago.

1

Client Served

Rating: 5

Outstanding educational and advocacy resource! CFRI are experts in all things Cystic Fibrosis.