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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

April 9, 2013
1 person found this review helpful

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1 previous review
February 23, 2011

CFRI has wonderful volunteers that have helped countless cystic fibrosis patients, parents, and grandparents for nearly 40 years. Through their wonderful annual conference attended by people around t... more

April 9, 2013
1 person found this review helpful

CFRI is an amazing organization at many levels. It is a wealth of information, reaching out to parents of newly diagnosed children with CF (a devastating time in their lives). It helped me cope with the heartbreak of having a child with CF. I am not sure I would have survived. They fundraise to support leading edge research into CF giving us all hope for a cure. They have a wonderful newsletter full of information, sending it free to anyone. And finally, they have a huge annual conference, hosting people from all over the world, where we can go and learn all the latest in research and care. The staff is very friendly, helpful and caring. This is the most vital organization I have ever been involved with.

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

February 23, 2011

CFRI has wonderful volunteers that have helped countless cystic fibrosis patients, parents, and grandparents for nearly 40 years. Through their wonderful annual conference attended by people around the world, helpful newsletter, and other activities, the organizations reaches hundreds. Its a privilege to be part of this. My son with CF is now 30 years old.

The Great!

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

I have attended many of their wonderful conferences and enjoyed their newsletter.

Ways to make it better...

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

None. Great group.

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

April 9, 2013
1 person found this review helpful

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April 9, 2013
1 person found this review helpful

I have participated in CFRI as a client served, a volunteer, a Board member, and an advisor (not all at once) for the last 25 years. I have never encountered a group more passionate about their cause or more professional in going about achieving their goal of helping patients, families, and caregivers dealing with cystic fibrosis. The provide quality educational events and are always available to answer questions and help in any way they possibly can. They do a remarkable job fundraising, and ensure that the money raised is directed toward quality research, always directed at improving the lives of those with this devastating disease.

More feedback...

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

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

April 9, 2013
1 person found this review helpful

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1 previous review
February 28, 2011

I am a grandmother of a 17 year old boy with cystic fibrosis. I have volunteered with CFRI ever since he was diagnosed at almost 3 years of age with this genetic disease. Our family was trying to f... more

April 9, 2013
1 person found this review helpful

I have been involved with CFRI since our grandson was diagnosed with CF just before turning 3 years old. Because of its sharing of information about CF through their annual summer conference, assisting those with cystic fibrosis and their caregivers, funding research to lead to a cure, and the wonderful people involved (staff and volunteers), I have served on the board in the past, participated in their annual fund raiser, served on the conference committee and helped in the office. This organization helps people stay tuned into the latest developments concerning the disease. There is always a helping hand. My grandson has transitioned to a CF adult care center and has transitioned to independent living away from home in a university situation. CFRI has helped this happen.

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

February 28, 2011

I am a grandmother of a 17 year old boy with cystic fibrosis. I have volunteered with CFRI ever since he was diagnosed at almost 3 years of age with this genetic disease. Our family was trying to find a cystic fibrosis organization to which to give a donatation in memory of a relative who died from the disease in 1969, so we found CFRI listed in the San Francisco Bay Area yellow pages!

Later upon our grandson's diagnosis, I became involved as a board member, later in other capacities. I presently am one of a group of three co-chairmen of their largest fundraiser (the Mothers' Day Tea solicitatio) and on their annual educational conference committee. I have assisted as a volunteer in the office helping out when needed. I am personally devoted to the staff and have found them to be hardworking, dedicated people who believe in finding a cure for cystic fibrosis as well as believing as we all do who help CFRI that education of the patients, parents, caregivers, partners, siblings, friends need to know that they can get the support they need for their loved one's care.

The Great!

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

I have seen the organization grow through the years both with its ability to increase itssupport to finance research projects and to educate the cystic fibrosis community with its annual conference, its newsletter, and its outreach programs. The conference grows in numbers yearly. The spread of educating and supporting people nationwide and worldwide is very impressive with all its programs.

Ways to make it better...

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

increase the donations, increase the volunteer base and fund more research toward a cure.

November 20, 2012
1 person found this review helpful

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1 previous review
February 24, 2011

From the creation of CFRI by a group of volunteer parents of cystic fibrosis children in 1975 to its present combination of volunteers, office staff, C.F. parents, patients and friends I have been pr... more

November 20, 2012
1 person found this review helpful

In 1961, I was the parent of eighteen month old twins and told they had a very serious and generally fatal disease. Naturally all I wanted was a cure for Cystic Fibrosis for them. Fortunately they continued to survive. In 1974 the name alone, Cystic Fibrosis Research, Inc. called me to join the newly formed volunteer group raising funds for CF researchers. That was how I could help!

Throughout thirty-eight years CFRI has continued its mission raising funds for peer reviewed CF research and education of the public, parents, and patients (who now may reach the median age of thirty-seven plus). Via newsletters, meetings, annual three day conferences with CF medical expert
speakers, .a summer retreat, devoted office staff and volunteers, CFRI keeps us up to date on all things pertaining to relevant issues and CF research.

And, YES, I'm proud to have been a member of Cystic Fibrosis Research Inc. all these years.

May the cure be found soon..

Sincerely,
Norma L. Stuckert

More feedback...

Was your donation impactful?

Definitely

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?

Definitely

When was your last experience with this nonprofit?

2012

February 24, 2011

From the creation of CFRI by a group of volunteer parents of cystic fibrosis children in 1975 to its present combination of volunteers, office staff, C.F. parents, patients and friends I have been proud to be a member.

The Great!

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

Peer review and CFRI approval of our research funded contributes to my pride and gratefulness for all who have contributed so much time, efforts and of course money to our CFRI.

Ways to make it better...

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

None

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 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 10, 2012

more

November 10, 2012

In 1982 our grand-niece was born and a few months later she was diagnosed with CF. At the time, life expectancy for those diagnosed with CF was in their mid-20s. Our grand-niece is now 30, married, and with a beautiful daughter of her own. The research CFRI does is priceless to the loved ones of people coping with CF. I hear lots of good things about CFRI from family members who have participated directly with major fundraising events and have served on the board.

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?

2011

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