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February 26, 2011
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Review from Guidestar
February 26, 2011
1 person 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.

The Great!

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

my child benefits from discoveries made here

Ways to make it better...

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.

February 26, 2011
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Review from Guidestar
February 26, 2011
1 person found this review helpful

CFRI not only supports CF research but drives it into new and unexplored territory. Over the past years, CFRI has generated a vibrant network of CF research in the Bay Area and beyond and has attracted the best scientists into the field. I think CFRI does a superb job in promoting CF research while supporting the CF community at the same time. Hats off to CFRI!

The Great!

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

my daily work

Ways to make it better...

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

make it bigger

February 25, 2011
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Review from Guidestar
February 25, 2011
1 person found this review helpful

Our 5-month-old granddaughter was diagnosed with CF through newborn screening. We were all shocked and devastated. I was a nusing student in the late 60's in Atlanta, GA where I took care of several children with CF, all of whom died before age 3 years. With that in mind, when our granddaughter was diagnosed, I immediately searched the internet for all information I could find and have continued to do so the last 4 months! The CFRI webinars have been a God-send to me and my family. We do not live near a major CF Clinic and this provides us with current best practice information we could not get otherwise.

The Great!

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

expansion of knowledge which has changed my negative attitude toward CFprognosis

Ways to make it better...

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

provide ongoing emotional support for families of newborns, finding a way to make that initial connection; also provide information for care of INFANTS with CF which is very different than toddlers or older children.

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?

Quite well

How did you find this group?

internet search

What, if any, change in your life has this group encouraged?

share our experience with CF - knowledge is POWER! (family advocacy!!)

When was your last experience with this nonprofit?

2011

February 25, 2011
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February 25, 2011
1 person found this review helpful

I have come to know many of the people at CFRI (Isa and Ana Stenzel,
David Sohoo) and my wife helps out with the Mothers Day tea fund raising
campaign. I have attended several CFRI education day conferences.

I think the name of CFRI is a little misleading since I think their
main
charter is more "Education" rather than "Research". The research
aspect of it, as far as I can tell, is to sponsor a handful of fellowships
at Stanford (under Jeff Wine) and Berkeley which I consider "education" rather
than "research". Of course education is very important since there needs to be
trained scientists and doctors to actually do the research! But a better
name might be Cystic Fibrosis Education Institute "CFEI".

One question which I suspect a lot of people who are familiar with
CFRI have is "We have the CFF, so why do we need the CFRI?". One question
which I have had to ask myself is "where should I donate MY money to help cure CF".
I have 2 kids with CF and I really want to spend my hard earned money in
the most effective manner possible. I can only contribute a modest amount
of money but I take it seriously. For me it came down to a choice between the
Cystic Fibrosis Foundation (CFF) or CFRI. The CFF is far, far larger in scale
and operates at the national level.

I personally write my check to the CFF because the CFF
has a clear strategy to cure CF and, because of that, I think
their programs actually attract more researchers into the field than
do the CFRI sponsored fellowships. I think the CFF strategy of allocating
money to strategic programs with biotech and pharmaceutical companies for
the CF drug pipeline has a higher probability of resulting in a cure than
does sponsoring 3 or 4 fellowships at Berkeley and Stanford. This is not to
say there is no value in sponsoring these fellowships. There is. I have attended
poster sessions given by these researchers at the CFRI education day
conference and they were outstanding. The researchers were very talented and highly educated
individuals but my sense is that the scope of the problem, finding a cure for
CF, is so huge that has to be tackled at the national level by hundreds of
researchers, physicians across dozens of institutions in a way which
harnesses the interests of pharmaceutical and biotech companies.

The Great!

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

The CFRI annual conference is a fire hydrant of useful information on all things CF. I would highly reccomend it to parents of newborn children with CF. I really appreciated meeting with parents of CF kids and grown adults with CF. It was a great source of support and hope when my wife and I really needed it. I have not attended any "CF camps" but my children may one day when they become teenagers!

Ways to make it better...

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

I would reorganize CFRI to be the south bay chapter of the CFF.

February 25, 2011
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Review from Guidestar
February 25, 2011
1 person found this review helpful

My professional career is coordinator of an adult cystic fibrosis center. My personal life has included two brothers with cf. One died at age 3, over 50 yrs ago, the second, at age 40, just 5 years ago. I have lived in the CF world, work in it, and have seen the results of research, education and support.
A couple of years ago, I was fortunate and honored, to be able to attend a CFRI Educaiton Weekend, and a patient Retreat just following. I was so impressed w/ the organization, the people involved, their dedication, hard work, determination, and the overall organization! This is an impressive group of individuals, who work hard, are compassionate, warm and supportive. I admit, I stole a few of their wonderful ideas and guidelines to bring back to my center on the east coast. While living w/ CF is difficult, CFRI works to make it easier, is supportive, and informational. I have frequently called to ask a question or advice about something, and I ALWAYS get a quick and warm, and of course, informative response. The work and dedication this team organization has for the CF community is phenomenal.

The Great!

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

See notes above

Ways to make it better...

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

Can't think of many ways to improve on this incredible organization--except maybe to get them to expand to the East coast!

February 25, 2011
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February 25, 2011
1 person found this review helpful

Two of my 3 children have CF. They were diagnosed in 1972 and we heard of CFRI (Actually a chapter of the CF Foundation @ the time) and needed information about CF. The members of this group provided that and much more. We were a part of the founding CFRI group in 1975. The ongoing information re discoveries in research, treatments, interaction with others aflicted is a marvelous resourse for those newly diagnosed in addition to those having delt with CF for many years.

The Great!

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

Information and personal support.

Ways to make it better...

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

Continue to support this energetic, informative and active group.

February 25, 2011
1 person found this review helpful

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Review from Guidestar
February 25, 2011
1 person 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.

The Great!

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

I have seen the results of the research they fund.

Ways to make it better...

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.

February 25, 2011
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Review from Guidestar
February 25, 2011
1 person found this review helpful

CFRI is a valuable resource to anyone involved in the struggle with cystic fibrosis. Through there newsletters, retreats, and conferences they help get the word out about the latest breakthroughs and updates towards cf.

The Great!

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

helping the whole community. They provide really great information.

Ways to make it better...

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

get involved and help out more.

February 24, 2011
1 person found this review helpful

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Review from Guidestar
February 24, 2011
1 person found this review helpful

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!

The Great!

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

I attended their annual conference in San Francisco in 2010

Ways to make it better...

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

I can't think of anything that should be changed. They dedicate their resources to finding a cure for CF - I am hopeful they will succeed in my daughter's lifetime.

February 24, 2011
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Review from Guidestar
February 24, 2011
1 person found this review helpful

Please help us for research for cystic fibrosis. my son has it and everyday i think of what it would be like to find a cure. i hate the thought of someday i may have to burry my own little boy, he does vigrious treatmenst everday morning and night to fight for his life. he never has a "normal" day. it is so hard to explain to my 4 year old little boy why he has to take all these medcines and all these treatments. the cystic fibrosis foundation is a great place to donate to. almost 90 cents of every dollar raised goes to research. i have been raising money for a cure ever since my son was diagnoised almost 5 years ago. with out your help there may never be a cure. please put yourselves in our shoes for a brief moment and imagine making your own child go through this everyday and knowing that one day it will kill your child, it may be when there 2 or 30, it dosent matter how old they are, your baby is always your baby. life expantancy right now is only 30 years old if there lucky, there are still lots of children dieing everyday at a much younger age. please help are babys now and donated to the cystic fibrosis foundation, so that one day we can make cf stand for cure found, because it would not be possible with out all of you. thank you for your time! and please donate to this great cause

The Great!

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

the results are wonderful, it dosent go to people, it actually takes all the money for research, so that one day we can find a cure and stop loosing our children over this deadly disease

Ways to make it better...

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

they a wonderful, i wouldnt change a thing honestly

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