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Cystic Fibrosis Research Inc

Rating: 4.95 stars   159 reviews 8,701

Nonprofit Issues:

Address:

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.

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650-404-9975
www.cfri.org

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Reviews for Cystic Fibrosis Research Inc

Rating: 5 stars  

2 people found this review helpful

I have been involved with CFRI ever since our grandson was diagnosed with CF three months before turning 3 years old. He is now 21 and a senior in college. CFRI has the most devoted hard-working staff, a respected research advisory board to give grants to do scientific CF research and dedicated volunteers that work tirelessly to spread the word about educating the public as well as to give hands-on advice to caregivers, family members, significant others and those afflicted with CF themselves. I have been a board member, a conference committee member, a co-chairman of their major yearly fund-raiser and my husband is on their audit committee so we appreciate all the efforts that go into fighting the defective genetic gene that causes one to have cystic fibrosis for which there is no cure.

 
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1 previous review
Rating: 5 stars  

3 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  

2 people 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

I have been with CFRI since my daughter was diagnosed 25 years ago. We lived in Los Angeles for over 21 years, but I always made a point to attend the yearly conferences at the end of July. I've learnt most of what I know of CF during these conferences and the educational seminars available on DVDs. Equally important is the support CFRI provides for caregivers and patients. The money raised through different fundraising opportunities provides very important help to research. Numerous breakthroughs have happened due to the financial grants CFRI made available to scientists. Presently I am volunteering in the office to help out in the day to day administrative tasks, as the organization works on a very low operating budget and prefers to fund new research rather than employ a lot of people. I've volunteered for other non profit organizations before, but none of them were as dedicated as CFRI's staff!

 
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Rating: 5 stars  

1 person found this review helpful

CFRI for many years has helped me as a parent of a CF'er cope with this terrible disease and keep me up to date on the latest research and medical treatments. The organization is a gem, helping hundreds. Their annual conference attracts people from all over the world. It is the only one of its kind and fabulous.

 
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1 previous review
Rating: 5 stars  

2 people 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.

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

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.

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

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

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

None. Great group.

 
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Rating: 5 stars  

1 person found this review helpful

I can not say enough about this organization. I was introduced to CFRI about 4 and a half years ago when our daughter was born with Cystic Fibrosis. We knew very little about CF and CFRI embraced us immediately with compassion, support and extensive education which was priceless. Their National Conference held every year is not to be missed along with their Monthly Support Group Sessions, Educational Seminars, and the Mother's Retreat which is amazing. Every individual that works or volunteers for CFRI has a heart of gold. I try to volunteer as much as I can to give back for what they have done for us and what they continue to do in hopes for a cure for my daughter soon.

 
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Rating: 5 stars  

1 person found this review helpful

I cannot say enough good things about Cystic Fibrosis Research Institute. I have been donating money to CFRI for many, many years, and have had the pleasure of meeting its executive director on numerous occasions. Ms. Landgraf has an adult daughter with CFRI, which gives an extra urgency and commitment to her, and CFRI’s, efforts.

CFRI funds research as well as awareness. I am primarily interested in its research activities. To give an idea about the importance of CFRI’s work, it is currently funding research in Identifying Metagenomic Signals Characteristic of Cystic Fibrosis Exacerbation Onset, Analysis of a functional network of ubiquitin-proteasome dependent degradation of CFTRΔF508, Development and Characterization of Novel 3D Airway Cell Models for CF Research, and Inhibition of Type 4 phosphodiesterases as a therapeutic approach for CF.

CFRI also does an excellent job with its education programs. For example, its October presentation of its CF Discovery Series is “Are They Gone? A Look at the History and Future of Pseudomonas Eradication in Cystic Fibrosis: Where We Have Been and Where We Are Going.” CFRI also has an annual conference as well as its newsletter, plus many other programs.

Donations to CFRI are well-spent. Approximately 41% of its budget is for research, 45.80% for its education programs, and only 13.2% is for administrative costs.

CFRI is a very important part of the battle against cystic fibrosis, and there are not enough stars available to rate it.

 
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Rating: 5 stars  

1 person found this review helpful

I am just amazed by the excellent support this organization gives to those who have CF, their families, and the researchers working to find a cure. Much progress has been made in treating this horrible disease, and this is in no small part due to CFRI's research funding. CFRI also provides frequent, high-quality educational updates to the community that keep everyone informed. All around, this is a top-notch operation! I'm incredibly proud to be supporting it.

 
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Rating: 5 stars  

1 person found this review helpful

I am the past Director of Research Development at Children's Hospital Oakland Research Institute ( CHORI). I have had first hand experience with CFRI's incredible support of our research scientists and the Cystic Fibrosis lab. Throughout several years, CFRI continued awarding grants to our CF scientists, helping them carry on with their research during challenging times when the NIH drastically cut their research budget. Furthermore, CFRI , their Executive Director, CFO and Board of Directors jointly assisted CHORI with its Summer Internship Program. This is an educational program that selects/admits high school and college students interested in pursuing a career in research, healthcare and/or science. Many of of thecstudents are under- resourced and need help with a stipend for transportation and meals. This was another program that NIH used to generously fund in the past but cut back in 2014. Our good friends and supporters at CFRI came to aid the CF lab. CFRI's generosity allowed Chori scientists admit the students who actually have CF or are from families with CF determined to make an impact in curing this life threatening disease. These students are mentored and educated hands on by scientists. They work on real projects and at the end of the course they make presentations to the entire team of investigators at CHORI+ like any PhD, they produce and create an abstract of their work. Throughout my tenure at CHORI,our CF lab received mental and monetary support from CFRI. Additionally, CFRI awarded one of CHORI's CF scientists with their annual recognition award.

 
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Rating: 5 stars  

2 people found this review helpful

I have been a CFRI member for 30+ years and have witnessed the care and support it provides to the CF Community.

Their publication, "CFRI Community," published tri-annually features articles about the latest developments in CD medication, treatment protocols, life-stories about living with CF, updates on sponsored research.

I've attended many of CFRI's annual education conferences featuring experts in all facets of CF, patient panel discussions about coping with CF, focus group sessions addressing specific CF areas in depth, and social events that affirm the power and care of the CF Community.

CFRI's sponsored research has long expanded the basic knowledge about the biology of CF providing the insights that allow the large pharmaceutical companies and research institutions to develop the drugs and protocols that have extended the median CF age from mid-teens when I became involved in 1982 to mid-forties now.

A few years ago, CFRI played a major role in getting the State of California to included CF in the mandated "New Born Screening" program. Early diagnosis is fundamental to living a successful life with CF.

And, because of the large number of CFRI volunteers, all of CFRI's programs are handled by a staff of FIVE people. Efficiency and effectiveness is their benchmark. They never miss!

 
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Rating: 5 stars  

1 person found this review helpful

I have been on the Finance and Audit committees and I currently serve on the board of directors. CFRI is providing education in the community, emotional support for CF families, and funding for research to find a cure for Cystic Fibrosis. The lives of CF patients and their families are constructively impacted by the CFRI mission. Life expectancy is being constantly extended and quality of life is improved but, there is much more to be done. CFRI intelligently applies funds.

 
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Rating: 5 stars  

1 person found this review helpful

CFRI is focused on leading edge research aimed at a cure for Cystic Fibrosis. CFRI also provides a network of warm and caring individuals who empathize and nurture CF patients and their families. Conscientious application of funds is the hallmark of this outstanding organization.

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?

2014

 
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1 previous review
Rating: 5 stars  

2 people found this review helpful

Cystic Fibrosis Research, Inc is driven by a comprehensive mission to provide scientific research and personal support. These two elements are essential. CFRI staff and volunteers are cheerfully dedicated.

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

 
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Rating: 5 stars  

1 person found this review helpful

I have been involved with CFRI for nearly 25 years . The cutting-edge research that CFRI funds annually has led to significant breakthroughs in the treatment of CF, and as a result benefits the entire CF community by providing hope and bringing us closer to a cure. I served on the Board of Directors for six years and know first hand how dedicated the CFRI staff, volunteers, and researchers are to improving the lives of those living with cystic fibrosis. CFRI is a lifeline to everyone affected by CF!

 
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Rating: 5 stars  

2 people 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.

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

 
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