Cystic Fibrosis Research Inc

Rating: 4.95 stars   159 reviews

Address:

1731 Embarcadero Road Ste 210 Palo Alto CA 94303 USA

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.

2015 Top-Rated Nonprofit
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650-404-9975
www.cfri.org

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Reviews for Cystic Fibrosis Research Inc

Rating: 5 stars  

1 person found this review helpful

I cannot say enough good things about Cystic Fibrosis Research Institute. I have been donating money to CFRI for many, many years, and have had the pleasure of meeting its executive director on numerous occasions. Ms. Landgraf has an adult daughter with CFRI, which gives an extra urgency and commitment to her, and CFRI’s, efforts.

CFRI funds research as well as awareness. I am primarily interested in its research activities. To give an idea about the importance of CFRI’s work, it is currently funding research in Identifying Metagenomic Signals Characteristic of Cystic Fibrosis Exacerbation Onset, Analysis of a functional network of ubiquitin-proteasome dependent degradation of CFTRΔF508, Development and Characterization of Novel 3D Airway Cell Models for CF Research, and Inhibition of Type 4 phosphodiesterases as a therapeutic approach for CF.

CFRI also does an excellent job with its education programs. For example, its October presentation of its CF Discovery Series is “Are They Gone? A Look at the History and Future of Pseudomonas Eradication in Cystic Fibrosis: Where We Have Been and Where We Are Going.” CFRI also has an annual conference as well as its newsletter, plus many other programs.

Donations to CFRI are well-spent. Approximately 41% of its budget is for research, 45.80% for its education programs, and only 13.2% is for administrative costs.

CFRI is a very important part of the battle against cystic fibrosis, and there are not enough stars available to rate it.

 
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Rating: 5 stars  

1 person found this review helpful

I am just amazed by the excellent support this organization gives to those who have CF, their families, and the researchers working to find a cure. Much progress has been made in treating this horrible disease, and this is in no small part due to CFRI's research funding. CFRI also provides frequent, high-quality educational updates to the community that keep everyone informed. All around, this is a top-notch operation! I'm incredibly proud to be supporting it.

 
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Rating: 5 stars  

2 people found this review helpful

I have been a CFRI member for 30+ years and have witnessed the care and support it provides to the CF Community.

Their publication, "CFRI Community," published tri-annually features articles about the latest developments in CD medication, treatment protocols, life-stories about living with CF, updates on sponsored research.

I've attended many of CFRI's annual education conferences featuring experts in all facets of CF, patient panel discussions about coping with CF, focus group sessions addressing specific CF areas in depth, and social events that affirm the power and care of the CF Community.

CFRI's sponsored research has long expanded the basic knowledge about the biology of CF providing the insights that allow the large pharmaceutical companies and research institutions to develop the drugs and protocols that have extended the median CF age from mid-teens when I became involved in 1982 to mid-forties now.

A few years ago, CFRI played a major role in getting the State of California to included CF in the mandated "New Born Screening" program. Early diagnosis is fundamental to living a successful life with CF.

And, because of the large number of CFRI volunteers, all of CFRI's programs are handled by a staff of FIVE people. Efficiency and effectiveness is their benchmark. They never miss!

 
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Rating: 5 stars  

2 people found this review helpful

At CFRI, my son and I experienced professional and efficient attention to our interest in finding a researcher doing pioneering work on CF. We have a small foundation, and there were many competing organizations/individuals who could have used our assistance. Filtering our needs through CFRI proved to be a wise and satisfying decision. We appreciate the ongoing relationship.

Was your donation impactful?

Likely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Likely

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

2 people found this review helpful

CFRI is a fantastic organization led by Carroll Jenkins, David Soohoo and a wonderful board of directors. I have been a contributor to CFRI for their annual conference and retreat for those touched by CF. I travel from Chicago to San Francisco every summe to attend the educational conference.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

3 people found this review helpful

In 1961, I was the parent of eighteen month old twins and told they had a very serious and generally fatal disease. Naturally all I wanted was a cure for Cystic Fibrosis for them. Fortunately they continued to survive. In 1974 the name alone, Cystic Fibrosis Research, Inc. called me to join the newly formed volunteer group raising funds for CF researchers. That was how I could help!

Throughout thirty-eight years CFRI has continued its mission raising funds for peer reviewed CF research and education of the public, parents, and patients (who now may reach the median age of thirty-seven plus). Via newsletters, meetings, annual three day conferences with CF medical expert
speakers, .a summer retreat, devoted office staff and volunteers, CFRI keeps us up to date on all things pertaining to relevant issues and CF research.

And, YES, I'm proud to have been a member of Cystic Fibrosis Research Inc. all these years.

May the cure be found soon..

Sincerely,
Norma L. Stuckert

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

From the creation of CFRI by a group of volunteer parents of cystic fibrosis children in 1975 to its present combination of volunteers, office staff, C.F. parents, patients and friends I have been proud to be a member.

I've personally experienced the results of this organization in...

Peer review and CFRI approval of our research funded contributes to my pride and gratefulness for all who have contributed so much time, efforts and of course money to our CFRI.

If I had to make changes to this organization, I would...

None

 
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Review from Guidestar
Rating: 5 stars  

3 people found this review helpful

I first attended a CFRI event in 1990 and have followed/visited/donated at various times since then.
CFRI went throught a change in directorship several years ago and, unlike leadership transition in the many non-profit organizations I have been affiliated with, they continued to build strongly on their original vision and previous accomplishments.
One of the unique aspects of CFRI is their blend of the professional and the personal. I have dropped by their office with no advance notice or phoned up out of the blue, and I am always given the same patient attention as if I had an appointment. This sensitive orientation to individuals is important (almost unheard of) in health care organizations and doubly so where the stresses of cystic fibrosis are often immense on consumers and their families.
Having read more CFRI newsletters than I can remember, I also appreciate the organizational transparency. Donations, annual expenses,and the fiscal aspect of the organization is always clearly spelled out. They prioritize solidly: research and service first and salaries and overhead second.
I could write more, but I will conclude by simply saying CFRI is a special organization with a great history and a dynamic vision for the future. I am proud to be affiliated with CFRI as a loyal donor.

I've personally experienced the results of this organization in...

Since I do not live in the vicinity of CFRI, I follow their research summaries and reporting of their annual conference via on-line and mailed newsletters. I also know individuals with cystic fibrosis who have benefitted greatly from the support and contact they have had with CFRI throughout the years. I greatly appreciate their commitment to advocacy and education on CF to the greater community and the world.

If I had to make changes to this organization, I would...

CFRI is so solid and professional, I can't think of anything to improve what they are doing.

 
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Rating: 5 stars  

2 people found this review helpful

On April 9, 2011, I will be 80 years old, and I have cystic fibrosis. Of all the organizations to which I donate, in my opinion, the CFRI is the best of them all. They are conscientious, dedicated, efficient, and successful. Their program to help those of us with CF, and to help the public understand the disease is excellent, and is not equaled by any other cystic fibrosis organization. I recommend CFRI to CF support groups on the internet, as CFRI makes a difference in the lives of those of us who have cystic fibrosis. I certainly am thankful they exist!

I've personally experienced the results of this organization in...

Heroes of Hope award. 2007.

If I had to make changes to this organization, I would...

Give themselves more pats on the back, and get more national recognition.

 
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Review from Guidestar
Rating: 5 stars  

3 people found this review helpful

CFRI is a results driven organization that never forgets what its mission is. It focuses exclusively on getting answers to the perplexing problems that are presented by cystic fibrosis and sharing the research immediately with those who donate to the organization. It channels money into the hands of researchers and scientists and the constant flow of research and information that is immediately relayed to the community is really impressive. It does not support large marketing or advertising staffs. It is a lean, mean research machine and its impact extends beyond cystic fibrosis as the discoveries made by researchers benefit medicine overall.

I've personally experienced the results of this organization in...

my child benefits from discoveries made here

If I had to make changes to this organization, I would...

not a thing except perhaps spread the word so that people who are able can feel comfortable donating and knowing that their money is well spent and well directed for the benefit of many, as it should always be but often isn't when donating to other organizations.

 
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Review from Guidestar
Rating: 5 stars  

2 people found this review helpful

CFRI is a wonderful organization that is funding important research in the field of cystic fibrosis. They also host many wonderful events that support those with cystic fibrosis through the sharing of knowledge from those in the medical field and through the sharing of information by others with cystic fibrosis. Our family really respects CFRI. They maintain a low-overhead so you know that any dollars donated to them will be used for the purposes of research or for support of cystic fibrosis patients.

I've personally experienced the results of this organization in...

I have seen the results of the research they fund.

If I had to make changes to this organization, I would...

I would hope that more people would donate to CFRI so that they could do more good work.

 
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Review from Guidestar