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133 Reviews
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April 10, 2013
1 person found this review helpful

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April 10, 2013
1 person found this review helpful

Once upon a time a little princess was born to her loving parents. She was breathtakingly beautiful with ruby red lips curled into a smile, creamy skin, wavy dark brown hair, long legs, and tiny hands with the most perfect little fingers. Life was perfect! The princess was taken home and for the first month, life in the kingdom was a bit unsettled. The little princess was hungry all the time, wasn't gaining weight, and never slept much. Her worried parents sought the advice of the royal physician. "All is well with our princess," he declared. "She just needs more to eat. You must give her some formula." At that time, the royal physician did not even entertain the thought that the princess was truly ill, and that her symptoms were consistent with Cystic Fibrosis. She was simply too healthy! Her parents added formula to her breast milk diet and soon the little princess wasn't crying much, but she was still eating all the time and gaining weight slowly. Over the next 20 months, life was delightful for the princess and her parents. She grew, slowly, into a chubby-cheeked toddler who doted on Pumpkin Bear, her beloved brown teddy bear, and she brought joy, laughter and love to all who knew her. The princess, at age 22 months, seemed to be thriving until one day when she fell ill with gastrointestinal problems. A dark cloud covered the kingdom while her worried parents anxiously awaited the results of a 'sweat test' -- a test that the royal physician ordered to determine if the lovely little princess had Cystic Fibrosis. When the test came back positive, the kingdom was drowning in tears shed for their precious princess because her parents had been told she would be lucky to live to be 5 years old. "That cannot be" her parents declared. They devoted themselves to giving their princess the best care possible. Her fifth birthday came and went and the princess was healthy in spite of the dire prediction by the specialist. The kingdom celebrated joyously and they gathered in Monterey to watch their darling princess ride one of the most exquisite horses in the CFRI Parade of Champions. The beautiful and kind princess has grown and married, and at almost 29 years old, she has celebrated many happy and healthy years punctuated by some very bleak years where she had a liver transplant at age 12 due to Cystic Fibrosis killing her liver, followed by several years of life-threatening lung infections brought on by taking the immuno-suppresion drugs needed to prevent her body from rejecting her liver. These necessary drugs enabled deadly opportunistic bacteria and fungus to grow in her CF lungs. Life was grim for many years. With the advice and support her parents started receiving from CFRI when the princess was 4 years old, her parents became knowledgeable about their daughter's disease and skilled at navigating the medical world so their princess could live a long and healthy life. For nearly 25 years, the princess and her parents have been involved in a supportive and caring lifeline relationship with CFRI. Throughout the years, the staff and other families with children afflicted with CF who also consider themselves part of the caring community created by CFRI, have always been available to discuss the latest treatment options, to provide general CF education materials/conferences/discussions, and to provide that much-needed shoulder to lean on in times of crisis. CFRI has created a true community of compassionate, caring and knowledgeable individuals, medical professionals, volunteers, staff, and board who are fiercely dedicated to providing education, research, advocacy, and support to individuals with CF and their families. CFRI reaches out to those in need - always providing pertinent health education materials, referrals, and answers. They provide seed money for cutting edge research aimed at developing new drug therapies and ultimately a cure for this life-shortening genetic disease; and they do all of this with a small staff and without a large expense budget. Their financial commitment to CF research and education is remarkable. With the guidance of their dedicated executive director, Carroll Jenkins, CFRI is solid financially and growing thoughtfully and strategically so that they can meet the needs of the CF community. CFRI is truly a GREAT Nonprofit!

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Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2013

November 10, 2012
1 person found this review helpful

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November 10, 2012
1 person found this review helpful

I first learned of CFRI in 1989, when my daughter was born and diagnosed with cystic fibrosis. My husband and I attended our first conference the following year and have been “regulars” ever since. The knowledge, as well as the comfort, we have received over the years has allowed us to be informed advocates for our daughter. The cutting edge research that CFRI funds annually has led to significant breakthroughs in the treatment of CF and as a result benefits our family and the entire CF community by providing hope. The outreach and support that the kind and dedicated staff provides is outstanding. I joined the Board of Directors five years ago and know first hand how dedicated the CFRI staff, volunteers and researchers are to making the quality of life better for those living with cystic fibrosis.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

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

Cystic Fibrosis Research, Inc is driven by a comprehensive mission to provide scientific research and personal support. These two elements are essential. CFRI staff and volunteers are cheerfully dedicated.

More feedback...

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

April 17, 2013
1 person found this review helpful

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2 previous reviews - show all
October 27, 2012

I have been a past board member, committee member and volunteer at CFRI for 35 years. This is the best organization serving families and patients with Cystic Fibrosis that I know of. This non-profit... more

April 17, 2013
1 person found this review helpful

CFRI is the BEST non-profit that I know of. I am a very long-lived cystic fibrosis patient,
and CFRI has done far more for me than have I for them.

I joined when I was much younger and was on the governing board, head of committees,
and spoke4 at conferences.

Now, they do
so much more for all of us who have CFand/or who have it in our families.

Carroll Jenkins and David Soo Hoo are the best!

Marion Rojas, marionjrojas2002@yahoo.com

More feedback...

When was your last experience with this nonprofit?

2013

October 27, 2012

I have been a past board member, committee member and volunteer at CFRI for 35 years. This is the best organization serving families and patients with Cystic Fibrosis that I know of. This non-profit agency does more in the way of education than does any other CF organization. I highly recommend it.

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

Cystic Fibrosis Research, Inc., of which I was a board member for
some years in the past, may just be the best non-profit agency that
I know of. They raise funds for research, sponsor events for all those
who have cf, and do a great job of educating the community affected
by Cystic
Fibrosis. The staff is amazing, courteous and helpful.
David Soohoo, Director of Prograns and Operations of the agency,
contributes online as well as in many ways behind the scenes.
Moreover, CFRI, is unique in that it protects those with cystic fibrosis
and their family members by screening for a few very dangerous and
readily transmitted bacteria.

Most of all, it just makes me feel good to know that CFRI is there for
me, for my family members with cf, and that it is accessible online and
that everyone associated with it just cares so very much.

I just wish that I had more money to contribute, and I do urge everyone
who has the means to help CFRI, its staff, and all those who benefit from all that they manage to do. Donations made to them truly serve the cause of all coping with cystic fibrosis--in themselves or in their families, or among their friends.

The Great!

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

Most of all, it just makes me feel good to know that CFRI is there for me, for my family members with cf, and that it is accessible online and that everyone associated with it just cares so very much.

Ways to make it better...

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

None

February 23, 2011
1 person found this review helpful

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Review from Guidestar
February 23, 2011
1 person found this review helpful

I became involved with CFRI in 1995, shortly after my daughter was diagnosed with cystic fibrosis. Since then, the organization has been a vital resource for our family. In addition to funding cutting-edge research and providing a top-notch conference, CFRI produces resource materials that have been invaluable through the years. CFRI’s newsletters, Discovery Series, web site and conference DVDs address a broad range of topics relevant to those impacted by CF. I have served on CFRI’s Board of Directors since 2002, and I know first-hand how efficiently and effectively donations are utilized. Living with CF can be extremely challenging, and CFRI addresses the multi-faceted needs of our community.

The Great!

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

that I am better informed about CF research and treatments and am a better advocate for my daughter.

Ways to make it better...

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

wish that it had even more funding to support its important research and expand its phenomenal advocacy and support services.

October 29, 2012
1 person found this review helpful

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1 previous review
February 19, 2011

I have been a CFRI Volunteer, client served , professional in CF, for over 10 years. CFRI has been a gem in my life and is truly one of the reasons I am still alive with CF. It has provided me a home ... more

October 29, 2012
1 person found this review helpful

I have cystic fibrosis. When I moved to the San Francisco Bay Area 20 years ago, CFRI became my second family. The volunteers and staff are personable, loving , compassionate, knowledgable about CF and incredibly resourceful and supportive. Twenty years later, I can honestly say I would not be alive without CFRI- they have taught me so much with their annual family educational conference (things not even my doctor knew) and have offered an invaluable number of skills ,wisdom and emotional support during their support groups, educational seminars and annual summer retreat for people living with this very challenging disease. CF remembers those we have lost, supports those struggling with the emotional and physical aspects of the disease, and inspires hope by funding critical research to find a cure. No other existing CF non-profit organization has supported me in any way CLOSE to the way CFRI has. Please support CFRI - unlike other national CF organizations, it is not just about fundraising and research for cures that will come decades from now; it is about supporting families in the here and NOW dealing with ALL aspects of living and surviving 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?

2012

February 19, 2011

I have been a CFRI Volunteer, client served , professional in CF, for over 10 years. CFRI has been a gem in my life and is truly one of the reasons I am still alive with CF. It has provided me a home away from home, with wonderfully supportive staff, volunteers, services and most of all HOPE with its funding of critical research and its sharing of crucial knowledge and education needed to fight this challenging disease. CFRI is unique from other CF organizations by its personal nature, its grass roots ability to cater its services to those living with CF NOW, providing emotional, social, psychological and practical support to families and patients living with CF,while doing an excellent job of fundraising and supporting vital CF research that will someday improve our prognosis. For over 20 years CFRI has beckoned me to become involved and stay involved and I cherish this organization deeply.

The Great!

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

Benefitting from CF Retreat, conference, educational services, newsletters, social support; learning about my disease and new treatments from the resources of CFRI.

Ways to make it better...

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

Encourage many people to donate to CFRI and grow it due to its potential, integrity, the dedication of its staff and volunteers and allow its impact to be known and felt globally.

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