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146 Reviews
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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.

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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.

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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

April 18, 2013
1 person found this review helpful

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April 18, 2013
1 person found this review helpful

Love CFRI's cause and everyone involved!
They are here for the CFRI community!
Kudos for our Five star CFRI; you are the best!

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 17, 2013
2 people found this review helpful

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April 17, 2013
2 people found this review helpful

CFRI has a wonderful history of helping people who have CF, their families and their caregivers. Their educational conferences are outstanding in their content and participation. As one of the older people who has CF, I really appreciate all they have done and are doing for those who are touched bu CF.

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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 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

April 17, 2013
1 person found this review helpful

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April 17, 2013
1 person found this review helpful

CFRI is a fantastic organization led by Carroll Jenkins, David Soohoo and a wonderful board of directors. I have been a contributor to CFRI for their annual conference and retreat for those touched by CF. I travel from Chicago to San Francisco every summe to attend the educational conference.

More feedback...

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

When was your last experience with this nonprofit?

2013

April 17, 2013
1 person found this review helpful

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April 17, 2013
1 person found this review helpful

CFRI is a great, dedicated organization focused on finding the cure to cystic fibrosis. The company is made up of fantastic individuals who serve as great role models to me. I have volunteered at CFRI for the last 7 months, and leave with a smile after every occasion. The company makes my time feel valued, and I actually feel like I am making an impact with my volunteer hours. I found CFRI in a confusing time in my life, when I wasn't sure how I could spend my time wisely. The members of CFRI welcomed me in with open arms, and immediately made me feel wanted. I feel I am making an impact everyday, and I hope it will help in future Cystic Fibrosis research.

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 17, 2013
1 person found this review helpful

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April 17, 2013
1 person found this review helpful

CFRI is a wonderful place to volunteer. The staff is so friendly and excited about the work that they do in the CF community. I have attended a fund raiser held by CFRI and it was an amazing experience to see the number of people that came out to support CF research. Through my time at CFRI I have gained so much insight in to how a community can come together. I always feel good about the work I do for CFRI and am so proud of what they contribute to cystic fibrosis.

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 12, 2013
1 person found this review helpful

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April 12, 2013
1 person found this review helpful

I was first introduced to CFRI by my mother and my initial relationship was more on a donation basis but I got more active about 2 years ago when my schedule freed up. I am so happy and grateful I did, I have met so many wonderful people and friends through this amazing organization as well as an abundance of knowledge I have attained through their educational programs. Not only do they fund life saving research for Cystic Fibrosis but they also provide a support network and education to families, caregivers and patients. CFRI hosts an annual education conference and a monthly "discovery series" that brings doctors, researchers, specialists, etc to speak about various topics relating to CF. The events are live webcasted for anyone who is not able to attend in person, which allows anyone and everyone to participate no matter where they are or how sick they are. I also have to mention my most favorite event, the annual teen & adult retreat, a week long event filled with exercise, arts & crafts, tons of fun, laughter and bonding with some truly amazing people. I cant even begin to say enough positive things about the staff, they are the most hard working, devoted and friendly people you could ever hope to work with. They might have a small office staff but they are able to accomplish very large things. All I can say is how fortunate I am to have these people and this organization in my life.

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

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