CYSTIC FIBROSIS RESEARCH INC

Rating: 4.95 stars   148 reviews

Issues: Health

Location: 1731 Embarcadero Road Ste 210 Palo Alto CA 94303 USA

Mission: The mission of Cystic Fibrosis Research Inc. is to fund cystic fibrosis research, to offer educational & support programs and spread awareness of cystic fibrosis. What sets CFRI apart from other CF organizations is our commitment to provide educational and personal support to those living with cystic fibrosis and their families. It has been shown that informed and knowledgeable patients maintain healthier lives. We believe that the information and assistance that CFRI offers can help reduce much of the emotional and physical distress associated with this prevalent, life threatening genetic disease.
Programs: We fund cystic fibrosis research regionally and nationally and currently supporting 5 post-doctoral fellows and support 3 CF research projects at Stanford, UCSF, UCSD, CHORI, SDSU. We host an annual educational conference, attracting renown speakers and participants from across the country. We issue three newsletters per year, free of charge to over 15,000 constituents. We also hold an annual Teen and Adult retreat for the CF community. We provide on-going support groups for teens and adults with CF and for parents and caregivers of children with CF. We oversee and information based website which is accessed by over 5,500 people each month. A Caregivers support program has recently been launched for the CF community. We provide direct information and referral to all in our community. Educational materials are available and free to the community.
2014 Top-Rated Nonprofit
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EIN 51-0169988
650-404-9975
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Community Reviews

Rating: 5 stars  

2 people found this review helpful

My child's doctor put me in touch with CFRI upon my child's diagnosis with cystic fibrosis (CF) 23 years ago. CFRI helped our whole family tremendously with education and support. I have been doing volunteer work and attending their annual conferences ever since. My children with CF have been attending the CFRI adult retreat for a few years now and have also benefited from the education and support CFRI offers them.

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

Was this review helpful? 
Rating: 5 stars  

2 people found this review helpful

This group of amazing people are working very hard to find a cure and save my 11 year old sons life and the lives of so many others! This research is so important to the CF community. This organization raises funds desperately needed to help people with CF to stay alive as well as something most of us do everyday without thinking anything of it, breathe! This group does wonderful things for the people with CF and their families, it has given us hope! They have raised so much awareness about the disease, so many people whom were not aware of CF are now aware of it and are now helping us work to find a cure for our loved ones. We would by no means be where we are in the CF world without the help from all of the donors and with out the resources from our donors to allow the amazing research teams to help find all of the new and wonderful treatments they have discovered while working to find a cure! We need them to continue to be funded so they can continue to save lives! My son, Carson, depends on them! The entire CF community and their families depend on this organization! They are the reason we have came so far! My son will be 12 in September, it is unbelievable how far the treatments, life expectancy, and research has came in just my sons lifetime! We are the closest to a cure than we could have ever imagined just 10 years ago! And for us to make CF stand for "Cure Found" and not Cystic Fibrosis, we need to keep up the research that this nonprofit organization works so hard on! This organization has changed my son's life, my life, my families life and so many others lives in such a positive way, the leaps and bounds that have been made over the years would be no where close to where they are now without this organization! Thanks for all you do to help my son and others to live and "breathe easy"!

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

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

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.

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

Was this review helpful? 
1 previous review
Rating: 5 stars  

1 person found this review helpful

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

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

Was this review helpful? 
1 previous review
Rating: 5 stars  

1 person found this review helpful

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.

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.

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

Raise even more money and find more volunteers.

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Review from Guidestar
Rating: 5 stars  

2 people 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.

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

Was this review helpful? 
Rating: 5 stars  

2 people 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.

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

Was this review helpful? 
Rating: 5 stars  

2 people 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!

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

Was this review helpful? 
Rating: 5 stars  

3 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.

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

Was this review helpful? 
Rating: 5 stars  

2 people 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

When was your last experience with this nonprofit?

2013

Was this review helpful? 
1 previous review
Rating: 5 stars  

1 person found this review helpful

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.

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

Was this review helpful? 
1 previous review
Rating: 5 stars  

1 person found this review helpful

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.

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.

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

None

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Review from Guidestar
Rating: 5 stars  

2 people 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.

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

Was this review helpful? 
Rating: 5 stars  

2 people 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.

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

Was this review helpful?