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133 Reviews
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August 2, 2013

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August 2, 2013

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.

Ways to make it better...

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

Get rid of their director.

More feedback...

How would you describe the help you got from this organization?

None

How likely are you to recommend this organization to a friend?

Unlikely

How do you feel you were treated by this organization?

Badly

When was your last experience with this nonprofit?

2013

May 30, 2013
1 person found this review helpful

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1 previous review
October 28, 2012

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 b... more

May 30, 2013
1 person found this review helpful

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.

Ways to make it better...

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

Give them more money so that they could grow throughout the country and effect more CF patients through out the country.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

October 28, 2012
1 person found this review helpful

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.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

When was your last experience with this nonprofit?

2012

April 29, 2013
1 person found this review helpful

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1 previous review
February 22, 2011

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 ca... more

April 29, 2013
1 person found this review helpful

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.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

February 22, 2011
1 person found this review helpful

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.

The Great!

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

Yes! I attend the annual education conference they organize and I receive their quarterly newsletter. When I have a question about medication or treatments someone at CFRI can point me to key people for information.

Ways to make it better...

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

I'd like to see CFRI's outreach touch even more people. This is a small but amazingly effective group of paid/volunteer staff, thoroughly dedicated and energized. It could make an even greater difference by reaching more people.

April 19, 2013
1 person found this review helpful

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April 19, 2013
1 person found this review helpful

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"!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

April 17, 2013
2 people found this review helpful

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April 17, 2013
2 people found this review helpful

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.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

April 9, 2013
1 person found this review helpful

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April 9, 2013
1 person found this review helpful

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.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

November 12, 2012
1 person found this review helpful

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November 12, 2012
1 person found this review helpful

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

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Likely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2011

November 12, 2012
1 person found this review helpful

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November 12, 2012
1 person found this review helpful

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.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

November 9, 2012

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November 9, 2012

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.

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

November 8, 2012
1 person found this review helpful

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November 8, 2012
1 person found this review helpful

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!

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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