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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

July 18, 2013

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July 18, 2013

Hi. I work for the cystic fibrosis foundation, regional office in Wilson,NC. We call the whole country, every state; banks, stores, daycares, salons, schools, etc. to raise money for research! I love my job, you really get a chance to realize that you are making a difference! *team cf

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

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

May 15, 2013
1 person found this review helpful

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May 15, 2013
1 person found this review helpful

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.

Ways to make it better...

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

not change a thing.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

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 21, 2013
1 person found this review helpful

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April 21, 2013
1 person found this review helpful

My child's doctor put me in touch with CFRI upon my child's diagnosis with cystic fibrosis (CF) 23 years ago. CFRI helped our whole family tremendously with education and support. I have been doing volunteer work and attending their annual conferences ever since. My children with CF have been attending the CFRI adult retreat for a few years now and have also benefited from the education and support CFRI offers them.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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 18, 2013

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2 previous reviews - show all
November 15, 2012

My husband and I have been members of Cystic Fibrosis Research, Inc. (CFRI) for 34 years. It is a wonderful organization that funds outstanding CF research and provides education and support for famil... more

April 18, 2013

I have belonged to CFRI for 34 years and am totally impressed at the CF research they fund and their ability to support CF families, CF patients and CF healthcare providers. Their annual CF Education Conference is fantastic with doctors, researchers and psychologists presenting the latest information on cystic fibrosis research and care. CFRI is here for the CF community. Please come to the CFRI Conference August 2-4 at the Sofitel in Redwood Shores, CA to learn all about CF and how to care for our CF children and adults.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

November 15, 2012

My husband and I have been members of Cystic Fibrosis Research, Inc. (CFRI) for 34 years. It is a wonderful organization that funds outstanding CF research and provides education and support for families having CF children and adults with CF. CFRI has an excellent annual National CF Education Conference each summer and publishes an outstanding newsletter four times per year. CFRI in partnership with Stanford University has a monthly Discovery Series which is are talks given by doctors, research coordinators, scientists and CF patients; these talks are broadcast online over the Web for all to hear and call in to ask questions. In the past I have served as Board President, Executive Director and have Chaired the Mother's Day Tea, a major grassroots fundraising effort. My husband has served as Board President and is a Member of the Research Advisory Committee. We highly recommend CFRI to anyone interested in cystic fibrosis research and education. Ann Robinson

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

February 28, 2011

I have been a volunteer for CFRI for 32 years and know that the organization is doing an excellent job educating parents, CF patients and care givers about cystic fibrosis. I have helped raise money by participating in the Mothers' Day Tea and special gifts campaign as well as served on the CFRI Education Conference. Our son who is 33 years old is doing well in spite of having CF; he is working full time, owns his own home. We attribute his many successes to the education we received at CFRI. Being personally involved with other CF families has been most rewarding and funding top quality research is such a worthwhile commitment.

The Great!

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

I have experienced the results by talking with many grateful parents of CF children and CF adults who attribute their good health and longevity to the education they received at CFRI.

Ways to make it better...

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

Raise even more money and find more volunteers.

April 18, 2013
1 person found this review helpful

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April 18, 2013
1 person 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.

More feedback...

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

April 18, 2013
1 person found this review helpful

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April 18, 2013
1 person found this review helpful

CFRI is a compassionate organization dedicated to the support of cystic fibrosis research and education. Their mission statement is: Cystic Fibrosis Research, Inc. exists to fund research, to provide educational and personal support, to spread awareness of cystic fibrosis, a life-threatening genetic disease.

Each employee and volunteer embraces this mission and it shows in everything they do. Parents, volunteers, patients, caregivers, medical staff and internal staff are always treated with compassion and respect.

If you are looking for a CF organization that will give 110% efforts at all times to balance fundraising, awareness, and education, while paying very close attention to the community they serve, this is the non-profit for you.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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