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133 Reviews
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November 9, 2012
1 person found this review helpful

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November 9, 2012
1 person found this review helpful

CFRI is a truly non-profit organization operated by a small, truly dedicated, full time staff along a number of parents, patients, family members and friends who volunteer to accelerate the therapy and understanding of cystic fibrosis. As a research scientist, working on Cystic Fibrosis for the past 40 years, I have seen the organization grow from a seed of parents determined to fight the disease by investing relatively small sums of funds in strategic areas for understand the pathology of the disease and especially at the same attracting young investigators to career in this area of medicine. In my veiw, the organization is especially conscious of where the funds they receive come from and equally conscientious of how they use them. CFRI is not a large organization, but it continues to make this part of our world a better place.

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How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

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

Living with CF means hours of home treatment every day. That's EVERY single day. CFRI provides much needed and insightful support to families living with CF. They make continuing education accessible to famiies living with CF. I'm happy to support their efforts. Thanks CFRI! J. Romero, LCSW

More feedback...

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

November 8, 2012

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November 8, 2012

Carroll and David are wonderful leaders for CFRI. They bring passion and expertise to the CF advocacy community. They have brought unique and valuable educational and peer-to-peer programs to the CF community--patient and healthcare providers.

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How does this organization compare with others in the same sector?

Quite well

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

A lot

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

October 29, 2012
1 person found this review helpful

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October 29, 2012
1 person found this review helpful

Compassionate group devoted to advancing care and treatment of patients with CF.

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How does this organization compare with others in the same sector?

Very Well

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

A lot

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

October 29, 2012
1 person found this review helpful

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October 29, 2012
1 person found this review helpful

CFRI is an amazing organization. I am a healthcare provider on a CF team and CFRI provides incredible research and support for patients, families and caregivers involved with Cystic Fibrosis. They continue to stay on the cutting edge of medication research and the search to find a cure.

More feedback...

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

October 28, 2012

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October 28, 2012

A great resource. Especially for those outside of the USA.

More feedback...

How does this organization compare with others in the same sector?

Quite well

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

A lot

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

February 28, 2011
1 person found this review helpful

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Review from Guidestar
February 28, 2011
1 person found this review helpful

My son Tony spent his young life attending CF camp in Oregon, becoming a counselor as he grew into an adult. Then The CF camps here had to close due to the deadly contagions that sepacia brought. Those camps were his anchor and a vital link to dealing with his disease. He and his young friends dealt with issues of life and death sharing things most of us don't have to face for decades.
Then after some years, he faced the inevitable and had a Transplant at Stanford. There he met Ana and learned about CFRI and the conference and camp they sponsor every year in California. CFRI gifted him with a scholarship.
I still hear him coming back from that experience:
"Mom, I can't tell you what this means. It's so incredible to be able to talk and share on this level again.. I feel like I've found such meaning in life with these people." He went on from there to lead a California team in the Transplant games...a highlight in all our lives. And he brought the beautiful, inspirational people he met at CFRI into our lives. We have been blessed by them, long after losing our son..
Last summer we traveled to the camp sponsored by CFRI. We saw young adults laughing and creating, living life fully as our son did.
They invited us to share in a few of their sessions. Those few hours enriched our lives beyond measure.
As my husband said then to these incredible young people: You can't be ordinary. You're "exrta ordinary"...and we are so blessed to have you in our lives.
CFRI continues to help make all that possible. They truly touch and change lives.

Dolores Diprofio Creede

The Great!

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

contacts, friends Please use my review in current campaign

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Make it better known

February 27, 2011
1 person found this review helpful

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Review from Guidestar
February 27, 2011
1 person found this review helpful

When my daughter was diagnosed with CF, friends who also had a child with CF told us about CFRI. It was the beginning of a long relationship, which eventually resulted in me changing my field of research to CF. CFRI was incredibly supportive as I made the difficult change--I couldn't have done it without them.

In the many years since, they have provided a constant source of information and support to the local CF community--and eventually their efforts have affected people all over the world.

The Great!

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

see above.

Ways to make it better...

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

Make it richer!

February 26, 2011
1 person found this review helpful

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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
1 person found this review helpful

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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!

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