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

I am very impressed & appreciative of the CFRI folks and all they do. I have a granddaugther who has CF .We have participated in their educational programs for 20 years. My granddaughter has benefited from the many programs resulting from their research grants .CFRI 's Educational programs & speakers have helped me do a better job in caring for our many patients with CF , like my Erin, in ourSpecialty CF Pharmacy. They have helped us in our care & know which medications are best, which pieces of equipment that are best for our patients. The expert's they bring to us with help gained from all their research. This could not be done without the grants from CFRI ., . This makes it a win-win situation for all in our CF family's community

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

CFRI , with their researchers & educational programs have taught us in our pharmacy the various items & medications & treatments that make us a true specialty pharmacy & are the very best & newest out there. We are then able to pass on to our patients in our CF world, We have been here for 26 years . we started this when Erin was born & we were told she had CF. We didnt have a clue. CFRI educated us fully thru their many , many programs & the researchers who came to speak & teach. .

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

Have them known all over the USA, so more folks would know to contribute to their great cause..

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Review from Guidestar
Rating: 5 stars  

2 people found this review helpful

Cystic Fibrosis Research incorporated (CFRI) put a real face to this very real disease of Cystic Fibrosis for me. It was 1984. I was 8 years old. My mom packed my blue hard sided suit case and loaded me up on a van full of strangers. We were all kids and we all had CF. We were all headed to the week long annual CFRI summer camp and this was my first trip of many to come.

I was shy at first. When I arrived off the van we were met with our "thumpers" or guardians for the week. Each camper had his/her own guardian in order to complete the tasks of handing out our daily pills and doing our daily physical therapy. We were taken to a room and weighed upon arrival. The goal was to eat so much in that short 7 days that we would gain weight. All of us were skinny an frail by what this disease doesn't allow our bodies to do, process nutrients the way the "normies" get to digest food.

It was at this camp for cystic fibrosis that I realized my brother and I weren't alone. There were so many other children out there with CF. They were all just like us. That was a huge ego booster. To be one of the "normies" for one week. It wasn't weird to cough or take pills. We all did it. We were all ravenously hungry and ate like we hadn't eaten in weeks only to not gain an ounce. We were all the same.

The CFRI camp no longer exists in this form. It is now the CFRI annual Adult/Teen Retreat. There are no more cabins filled with CFers lined up on bed after bed being beaten for treatments. We stay in single rooms. We aren't allowed to touch each other (three foot rule!) But we are older now and we are there for the emotional support. CFRI has done what all other CF camps failed to do when they were shut down. CFRI has let the camp experience continue on. They let the bonding embrace a new crowd of CFers. I don't know one single Retreat goer that doesn't come away from that week feeling refreshed to take on another year battling this disease.

The disease can be alienating in the real world. CFRI Adult/Teen Retreat is the perfect medicine for the mind, the body and the soul. We laugh and cry and share and learn. It's an amazing experience and could only be made possible through the generous donations CFRI receives throughout the year.

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

The is no dollar amount to be placed on the experience a CFer can take away from a week long Retreat by CFRI. The emotional highs and lows during the week feed the CF soul exactly what it needs to continue battling this horrible disease, for which there is no cure. Being around other comrades with CF is just what the doctor ordered, even with the strict infection control policies now in place.

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

Increase funding to CFRI so they could do even more good in the Cystic Fibrosis Community. We are a one of a kind group with one goal in mind, TO LIVE. We all want to live and breathe without effort. The only way to do that is to find a cure. The only way to find a cure is to support fabulous organizations like CFRI.

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Review from Guidestar
Rating: 4 stars  

2 people found this review helpful

Both my sister and I have Cystic Fibrosis and I regularly receive emails from CFRI updating me about new research and programs that are going on. I am always amazed about the lengths that this company goes to in order to serve the CF community and to better increase our quality of life!

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

Every email that I read and every breath I breathe with the research that they have accomplished.

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

Increase their funds so as to receive more information!

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Review from Guidestar
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Role: General Member of the Public
Rating: 5 stars  

2 people found this review helpful

Anyone out there researching fo Cystic Fibrosis and trying to find improvements for the lives of the people living with Cystic Fibrosis deserves 5 Stars!

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

NA

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

NA

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Review from Guidestar
Rating: 5 stars  

2 people found this review helpful

Our family has been a supporter as well as clients of CFRI for about ten years after we found out that our children have CF. We support this organization because CFRI advocates for cutting edge medical research in the field of Cystic Fibrosis. The grants that they offer attract leaders in the field who produce results.
We like the small family feel to this organization, and feel a connection to the small staff that works hard to serve our CF community.

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

being provided with informational resources.

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

make certain that they had more funding for CF research.

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Review from Guidestar
Role: Professional with expertise in this field
Rating: 5 stars  

2 people found this review helpful

CFRI is a small but impactful organization that provides exceptional educational opportunities and support for both cystic fibrosis patients and their families. It also does a wonderful job in promoting and funding cutting edge cystic fibrosis research and disseminating this information at their annual meeting. They also prove a unique opportunity at their annual meeting for cystic fibrosis researchers and patients (and their families) to interact and discuss aspects of each other's respective experiences with the disease.

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

funding a postdoctoral fellow in my group to pursue cystic fibrosis airway microbiome studies

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

find them additional support to expand their personnel and bandwidth.

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Review from Guidestar
Rating: 5 stars  

2 people found this review helpful

I feel a great attraction of CFRI is its policy of funding research in Cystic Fibrosis by young medical doctors and/or PHDs to attract them into this field of research..............I believe this brings new energy and ideas into the pursuit of knowledge about this disease........

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

I've not been the recepient of any of the organization's output

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

I have no suggestions for change in this organization

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Review from Guidestar
Rating: 5 stars  

2 people found this review helpful

After moving to N. California, I was looking for a Cystic Fibrosis support group for our family. We had two young children with cf, and dealing with the everyday aspects and expenses had taken a tole on our lives. Having no family here, we felt alone, but what a blessing it was to find the CFRI support groups and summer camps. Our children have grown many rich and wonderful relationships over the years because of the early camps. The camaraderie that is established by the on-line. and occasional meetings, has developed in to a family of 'cf siblings' that no other group can match. Without CFRI our children may have not been as healthy as they are partially due to the CF Conferences we have been able to attend. Each conference brings new and exciting treatments to the cf community and our family. Our "children" are now twenty five years old and almost thirty years old! What an accomplishment, all with the help of CFRI.

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

The value, thoughtfulness and caring each and every volunteer and employee puts toward helping people living with cystic fibrosis to live a productive and full life.

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

Give them more funding so they could branch out to people in the North Bay area of California and eventually all of the United States.

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Review from Guidestar
Rating: 5 stars  

2 people found this review helpful

The CFRI conference was the best thing my husband and I did for ourselves since our daughter was diagnosed with CF. It helped us so much to deal with this diagnosis. We learned so much from all of the other parents, speakers and presenters.

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

Attending an event they put on to learn more about my daughters illness.

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

I do not know.

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Review from Guidestar
Rating: 5 stars  

2 people found this review helpful

CFRI is a great organization that doesn not get enough attention for all the hard work they do and education they provide! CFRI is truly caring about those of us who need information and are affected by Cystic Fibrosis.

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

I have been in research studies. Also, the CFRI adult retreat every summer seems like a wonderful experience that I have yet to go to, but look forward to.

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

More funding.

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Review from Guidestar