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  

3 people found this review helpful

I served CFRI as a summer intern (2013) and look back on the experience as a great one. I worked closely with the CFRI staff and volunteers to help with planning their annual summer conference and adult/teen retreat. They are a very lovely organization to work with; they are dedicated to their mission and are caring to their community. I was very touched by all the people and families I've met during my summer. The skills and knowledge that I gained from working at CFRI have followed with me throughout college and will beyond graduation!

 
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Rating: 5 stars  

2 people found this review helpful

CFRI is a non-profit agency that helps those with cystic fibrosis, their relatives, friends and caregivers get educational support, support basic research and learn how to cope with the rigors of this genetic disease which has no cure as of now. My 20 year old grandson and our family have benefited greatly from their work. Progress is being made due to the many scientific advances in the understanding and treatment of CF. CFRI educates the larger community about cystic fibrosis hoping to involve them in the search for a cure. It's booklet to be used in the classroom informs teachers about the disease and clarifies the need for certain arrangements to be made for a student with CF. Their annual conference updates the CF community and professionals of the newest advances along with help with psychosocial problems. Their support groups fill a need to help relatives/partners/siblings of the newly diagnosed through to those with CF reaching the later years of adulthood. Their strict cross-infection guidelines allow those with CF to participate if they have an approved sputum culture and medical release form signed by their CF doctor.

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

I would hope that more and more people affected by CF would join the volunteer ranks of this organization. The small staff is dedicated to working long, hard hours to ensure that those with CF live long, prosperous and productive lives.

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?

2014

 
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1 previous review
Rating: 5 stars  

2 people 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.

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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1 previous review
Rating: 5 stars  

1 person found this review helpful

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.

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.

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.

 
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Review from Guidestar
Rating: 5 stars  

1 person found this review helpful

The staff and volunteers with this non profit are 100% committed to helping individuals and families obtain the latest information available to fully understand this genetic condition and deal with the social, economical and healthcare issues that arise. They are also committed to help fund research that may lead to cures for Cystic Fibrosis. I have truly enjoyed volunteering with this non profit organization over the last two years. D.Zimmerman

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?

2014

 
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Rating: 5 stars  

1 person found this review helpful

I have been volunteering for ~ 25 years for CFRI. CFRI reached out to us shortly after our daughter was born and diagnosed w/ CF. We were scared about how long our daughter would live. The life expectancy at that time was ~18 years but what did that really mean? How severe was our daughter's CF? What should we being doing as parents? Seemed like thousands of questions were racing thru our heads! CFRI was there to comfort and educate us! They pointed us to CF doctors and other members of the CF Community we could talk to. They are not just an organization formed to raise money for research! They are just as concerned about the quality of day-to-day life for people living w/ CF. I am convinced that the support and care that CFRI has provided has definitely helped extend the lives of those living w/ CF!

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?

2014

 
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Rating: 5 stars  

1 person found this review helpful

Hi. I work for the cystic fibrosis foundation, regional office in Wilson,NC. We call the whole country, every state; banks, stores, daycares, salons, schools, etc. to raise money for research! I love my job, you really get a chance to realize that you are making a difference! *team cf

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

 
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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

 
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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

 
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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

 
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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

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

 
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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

 
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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

 
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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

 
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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