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2020 Top-Rated Nonprofit

Cystic Fibrosis Research Inc

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Birth Defects & Genetic Diseases Research, Health

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 CFRI offers can help reduce much of the emotional and physical distress associated with this prevalent, life threatening genetic disease.

Target demographics: persons with cystic fibrosis, their families, friends, and support networks.

Geographic areas served: Palo Alto, CA, but have impact nationwide and abroad.

Programs: CFRI funds cystic fibrosis research regionally and nationally and currently supports CF post-doctoral fellows and CF research projects. We host an annual national CF educational conference, attracting renown speakers and participants from across the country. In addition, we also issue two print newsletters - in English and Spanish - per year, free of charge to over 15,000 constituents. These complement our weekly e-Newsletter. We also hold an annual Teen and Adult Summer retreat for the CF community, as well as a Mothers Retreat. We provide on-going support groups for teens and adults with CF and for parents and caregivers of children with CF. CFRI oversees an information-based website 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 made available and are free to the community.

Community Stories

178 Stories from Volunteers, Donors & Supporters

Professional with expertise in this field

Rating: 5

CFRI is incredible. In addition to their tireless work on funding research for a cure, their programs to support people and families living with CF are robust and nonstop. We at our CF center are so lucky to have them as a partner!

Volunteer

Rating: 5

CFRI is more than an organization, it is a family. This is how I feel since I encounter the love and support of every member. For the people who work and volunteer here, this is not a job, this is their life purpose and their mission. What amazes me the most is how this organization does not forget any members of the CF families. Mothers, Fathers, brothers, sisters, and even friends are considered here. The organization offers the most wonderful resources to educate and support the families of the CF members in addition to launching brilliant research towards a cure. I am only giving them 5 stars because I could not find 10+ which will be a more accurate description!!!

1 Ann R.

Volunteer

Rating: 5

About Cystic Fibrosis Research, Inc. in 2020

Cystic Fibrosis Research, Inc. (CFRI) is a 501(c)(3) charitable organization founded in 1975, that funds cystic fibrosis (CF) research and offers education, advocacy and psycho-social support to those with CF, as well as their families and caregivers.
CFRI’s mission is to fund CF research, provide educational and personal support, and spread awareness of CF, a life-threatening genetic disease. CFRI seeks to inform, engage and empower the CF community to reach the highest possible quality of life, as proceeds work towards a cure.
CFRI was incorporated in 1975 by a small group of CF family members whose children were not expected to survive their teen years. These founding members were committed to keeping overhead low so as to raise funds for research. Originally, the founding members were all volunteers, until the first full time executive director was hired in 1990.
Initially focused solely on research, CFRI responded to the aging CF community’s needs by expanding its programs to include educational and support. CFRI grew into a million-dollar agency in 2012 and continues in its efforts to fund research, education, psycho social programs to those with CF, their families and caregivers. When our son was born in 1977 and diagnosed with CF at 5 weeks old, the doctor told us that he would live to be 11 years old. With his diagnosis, I changed careers and joined CFRI as a volunteer, to raise money and to learn how to care for him. He is now a thriving 43 year old man, taking Trikafta, with a beautiful family, a father, a home owner and full time worker.
CFRI’s major goals are:
Research: To ensure research will continue toward a cure, we fund collegiate CF researchers who then collaborate with pharmaceutical companies such as Vertex to develop CF medicine that lead to drugs like Orkambi, Symdeko and Trikafta that have vastly improved the lives of those with cystic fibrosis.
Advocacy: Engage the national CF community, industry and funders in advocacy and awareness efforts that increase quality of life for cystic fibrosis patients.
Education: Create innovative and responsive education and support programs for the CF community including an annual Cystic Fibrosis Family Education Conference where researchers and doctors from around the world present new information about cystic fibrosis discoveries and treatments. In 1988, I organized the first Cystic Fibrosis Education Conference and then organized the following 12 annual educational conferences so we could learn how to care for our CF families. In 2020, CFRI had its 33rd National Cystic Fibrosis Education Conference.
Sustainability: Develop new partnerships and strengthen existing collaborations with the community, industry and funders.
CFRI’s EIN 51-0169988

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Volunteer

Rating: 5

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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Client Served

Rating: 5

CFRI has continually gone above and beyond to support Cystic Fibrosis patients, families and friends. My daughter is 18 years old and through the years I have learned invaluable information through CFRI's programs. It gives me a sense of community and empowerment that I would not obtain from another organization.

This year my daughter was able to attend retreat, it was an amazing experience for her to meet and discuss Cystic Fibrosis with others that know first hand how challenging CF can be! As my daughter blossoms into adulthood and independence I am thankful for her involvement with CFRI. I am confident she will continue to be connected to the CF community through CFRI and sincerely hope she expands her knowledge of CF through CFRI's programs.


Client Served

Rating: 5

CFRI has continually gone above and beyond to support Cystic Fibrosis patients, families and friends. My daughter is 18 years old and through the years I have learned invaluable information through CFRI's programs. It gives me a sense of community and empowerment that I would not obtain from another organization.

This year my daughter was able to attend retreat, it was an amazing experience for her to meet and discuss Cystic Fibrosis with others that know first hand how challenging CF can be! As my daughter blossoms into adulthood and independence I am thankful for her involvement with CFRI. I am confident she will continue to be connected to the CF community through CFRI and sincerely hope she expands her knowledge of CF through CFRI's programs.

Client Served

Rating: 5

CFRI continues to raise the bar for the many ways it cares for the well-being of people with CF, their families, and loved ones. The last 6+ months I have accessed yoga classes and support groups that have helped me to better manage my physical and mental health. Although I dearly missed the in-person CF Adult Retreat and CF Educational Conference, I did benefit from the live online versions of these activities. I was still able to connect with my peers, laugh, mourn, exercise, learn, and get up-to-date research and information from leading scientists and clinicians working with people with CF. The community I found through my connection to CFRI is a unique group of individuals who value a holistic approach to CF care and recognize the importance of quality of life, the importance of community and personal connection in maintaining quality of life, the importance of the more subjective indicators of health in addition to comprehensive medical care and therapies and objective indicators of health. Fellow adults with CF I have met over the years have served as role models of how to best care for CF while striving and working toward educational, professional, and personal goals. I am grateful to CFRI for creating the space to meet and develop strong, personal bonds with adults with CF and the greater CF community through in-person events.

Volunteer

Rating: 5

My husband and I have been involved with CFRI (Cystic Fibrosis Research, Inc.) for 23 years as supporters and volunteers on a variety of committees including my serving on the board of directors for several years. Why? Our grandson, now 26 years old, was almost 3 when he was diagnosed with cystic fibrosis, a genetic disease that has no cure to date. Throughout the years, CFRI has provided us with support and vital information through their education and research programs so that our grandson and our entire family has access to CF resources that help guide us, comfort us and give us hope in Cameron’s battle with this life-threatening disease. He is doing quite well at this point having graduated from college majoring in mechanical engineering and having secured a good job in his field. We whole-heartedly support all the programs the organization has offered and believe they are unique in their fiscal responsibilities by limiting the number of staff they employ and engaging so many volunteers to help us reach our goal. The organization is such a caring group for our community.

Georgia B.1

Client Served

Rating: 5

CFRI provides information and programs for the CF community. CFRI offers podcasts on topics such as financial planning, current CF research and sexual and reproductive health. CFRI offers yearly retreats, support groups, yoga classes, and activities like crafts and game night to those with CF. CFRI provides members of the CF community funding for physical training programs and mental health sessions. CFRI funds research to improve CF treatments and extend life expectancy for those with CF. CFRI advocates for those with CF by meeting with policy makers to bring about positive changes to the CF community. CFRI serves the CF Community by making life better for those living with CF.

Volunteer

Rating: 5

CFRI is family. They have been on my side for 9 years now. Every person at CFRI genuinely cares about every single person that reaches out to them. They never stop working to strive to help others with the many programs, retreats, and conferences they offer. I would do anything for this organization. CFRI should be recognized for far exceeding all expectations when it comes to a nonprofit. They are truly wonderful people.

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Volunteer

Rating: 5

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.

Client Served

Rating: 5

CFRI has been a tremendous source of community support and education for me as an adult with cystic fibrosis. CFRI regularly hosts community events that bring people together from all over the nation. Connecting with a great group of people allows me to find support, encouragement, and fun. Without this community, I would truly be lost.

CFRI also hosts research-oriented talks to help bring the latest news in CF-related scientific advancements to the community. This informs our community, keeping us all learning. Again, without this I would be lost. I have learned news that I bring to my own doctor to discuss, keeping my care up to date. I also gain hope for the future, as the latest discoveries hold promise to make care easier.

I have a great love for this organization. CFRI has become a big part of my life, and I've been giving back as a volunteer as well. Everyone who works there is so nice, and I've become friends with some of the staff. I know it must be incredibly challenging running such a successful organization while keeping a close eye on the budget, so I highly respect their care to ensure the organization continues healthy and strong.

Volunteer

Rating: 5

Wonderful non profit with many of the staff touched personally by CF. CFRI is full of compassionate hard working professionals that raise money with all their heart and soul.

Professional with expertise in this field

Rating: 5

I love working with CFRI! They support the CF community with many outreach programs and provide funding for research to find a cure for CF. Their staff is professional, educated, and fun to work with. I look forward to every event, large and small, that they are organizing for the CF community. I recently attended their Masquerade Gala and had a wonderful time while donating for a great cause!

Professional with expertise in this field

Rating: 5

I have been involved with CFRI over the past two years. They are an incredible organization helping CF patients and caregivers with education, fundraising, research and advocacy. It is the best advocacy group I have been involved with in the healthcare industry during my 25 year experience.

KKapinas

Professional with expertise in this field

Rating: 5

CFRI is an incredible organization that advocates for the entire cystic fibrosis community, including individuals with CF, caregivers, and family members. My experience with them over the past 4 years has been incredibly heartening to see all the opportunities for support, education, and advocacy. Please look into this organization to learn more about CF and get involved in any way that you can! Big thank you to Siri and Tony for being amazing colleagues!!

Richard M.8

Board Member

Rating: 5

I'm a physician - an academic pediatric pulmonologist, professor, and former CF center director at Stanford University, who has been involved with CFRI for many years. CFRI has a unique place in the CF community, serving as a support system as well as research funder. CFRI provides this support in many ways, including subsidizing counseling services, providing venues and technologies for peer group events, and offering educational strategies ranging from a Web-streamed annual conference to archived lectures, newsletters and teaching aides. CFRI provides a strong advocacy forum at the regional, state and national levels. And CFRI has supported focused, high-impact research at basic and clinical science levels for decades. I joined the CFRI Board of Directors several years ago and continue to marvel at the staff's energy, ingenuity and competence in serving the CF community. It's a wonderful organization worthy of your support!

Board Member

Rating: 5

I have been a member of CFRI since its inception over 35 years ago. It has grown into the most incredible organization, funding state of the art CF research, funding exceptional programs for people with CF and their families, doing ongoing public advocacy outreach programs and has become an extended community/family for many who have CF or loved ones living with CF. I have CF and have been volunteering for CFRI for all of these years, working along side the incredibly hard working and devoted team that runs this organization!

Board Member

Rating: 5

I have been involved with CFRI for over 30 years. They raise money to fund innovative and ground-breaking research, as well as provide support to people like me, who have CF and have ever-changing needs as our disease progresses. Their educational programs online and their in-person annual conference are always amazing and informative. In the past few years, CFRI has really stepped up its advocacy as well, which in this world where people with chronic and progressive illness are often overlooked, is huge. Finally, CFRI is my family. The staff and Board members are incredibly dedicated to make this organization the best that it can be.

Volunteer

Rating: 5

I have been involved with CFRI for nearly 30 years as my daughter was diagnosed with cystic fibrosis in 1989. She now has two sons of her own and CFRI has been a lifeline of information and support for our family and others living with this challenging disease. It funds first rate researchers pursuing scientific advances in order to accelerate progress as well as offers vital programs addressing the ever-evolving needs of people living with CF. And most important, CFRI is a community that keeps our family informed and optimistic.

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Volunteer

Rating: 5

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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Donor

Rating: 5

Formed 44 years ago by parents of and people with CF, CFRI has been a steady source of support for the CF Community. From facilitating access to professional counseling, to creating group support programs, educational conferences, podcasts covering a wide range of CF related issues, to funding basic scientific research that has provided the knowledge needed by the medical community and pharmaceutical industry to improve the treatment protocols and develop the medicines that have stretched the median CF age from the late teens when I became involved in 1982 to mid-forties now. It has taken, and still is taking, "A Village" to make this progress and CFRI has been a significant member of that Village.

A small, but focused, committed staff which, as they say, "Has skin in the game," either as a parent or relative of a CF person or close friend of such person. They have a highly vested interest in getting the most out of every hour volunteered and every dollar donated to the well being and steady enhancement of the CF Community. And CFRI has been VERY successful in achieving their goals!

Client Served

Rating: 5

We have been involved with CFRI ever since our 5-year-old daughter was diagnosed. It is an amazing charity with an incredible staff. Proceeds are used very efficiently and maximize benefits to research and the needs of those afflicted with this horrible disease. They are very involved with funding amazing research and also advocating for the CF community. I can't speak highly enough of this organization!

7

Volunteer

Rating: 5

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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Volunteer

Rating: 5

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.

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2

Volunteer

Rating: 5

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!

2

Volunteer

Rating: 5

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.

Previous Stories
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Volunteer

Rating: 5

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.

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1

Donor

Rating: 5

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.

1

Donor

Rating: 5

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.

1

Client Served

Rating: 5

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.

2 Ed__40

Donor

Rating: 5

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!

1

Board Member

Rating: 5

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.

Previous Stories
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Board Member

Rating: 5

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.

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1

General Member of the Public

Rating: 5

Amazing information in a constant clear description that I'm always sharing with groups and support it continuing. There are 70,000 X Family = Millions and CFRI Is a constant in helping. 65

3

Volunteer

Rating: 5

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!

2

Professional with expertise in this field

Rating: 5

This is one of the best organizations in our CF community,I have been associated with them for over 25 years. .I was a co-founder with Lois Adams for the first ever Speciality CYSTIC FIBROSIS PHARMACY in Orlando Florida. We did it as I had a grandchild born with Cf and no one could really help with the various meds/ supplies needed for the CF families.
Lois was very well trained in putting this together , having been the Director of the local Regional hospital where all illness were brought.
I was the President of the Central Fl. CF Support Group and was very active in other venues about CF. We made a great team...
The CFRI was the biggest and the best and the ONLY one at the time that dealt with the families AND adults with cf. The CFF only did fund raising for research , along with NIH..at that time.

I am now retired , but still active in the Cystic Fibrosis community,as well as LUNG TRANSPLANTS.. My grand daughter has had a double lung transplant .She is now 30 years old .She is also very active in fund raising for the cause as well,.

The CF Pharmacy is not a non-profit, technectly, BUT ,there is much done for families that could put us on that list over the past 30 years..

The CFRI is the most active and and productive all over for the Cystic Fibrosis Communities all over the world..
I would rate then NUMBER ONE...........in the world..

I look forward to seeing them all in the future.......
GrandmomBev
Beverley Donelson

2

Professional with expertise in this field

Rating: 5

CFRI is an amazing non-profit that continues to grow in critical ways for the cystic fibrosis community. At a time where research funding is scarce, CFRI works hard to fund new, cutting-edge science in search of a cure, and to support a better quality of life for those with CF. Their programs and materials make information accessible and link the experts to patients and families. With Sue Landgraf at the helm, an amazing staff and an engaged, active Board of Directors, this organization responds to the community with commitment, energy and compassion. As an attendee at the recent National CF Family Education Conference in California, I could see first hand that CFRI is an extraordinary group of people dedicated to helping all of us who are touched by CF.

2

Board Member

Rating: 5

CFRI is a key resource for the CF community including families dealing with CF, patients with CF, CF researchers and physicians. Through educational conferences , live streaming special topic presentations, DVDs, newsletters, community outreach and fundraising, CFRI provides an invaluable service the the CF community. CFRI staff, Board members and volunteers are committed to spreading awareness of CF, answering questions related to CF research and development , promoting fundraising and educating the public about CF. Additionally, CFRI is making huge efforts to reach out to the Hispanic community dealing with CF providing educational materials, bi lingual newsletters and DVDs. CFRIs fundraising successes have had huge impact in providing monies for CF researchers who are making great strides in CF research.

3

Professional with expertise in this field

Rating: 5

I was honored to be invited to give a keynote address to the Cystic Fibrosis Research Inc's (CFRI) "27th National Cystic Fibrosis Family Education Conference" on August 1, 2014. I learned much more about this outstanidng organization, which promotes basic science research, public education, and support for patients and families with cystic fibrosis (CF). CF is a complex genetic disorder, and patients must address a number of treatment needs each day, often totaling 2-3 hours per day. CFRI is a greass roots organization that comes along side patients and their families to help. IN addition, they support important basic science research that will help find a cure for CF, as well as improving the care of CF patients until the cure is found. I higly endorse this outstanding organization, which is worthy of your support.

1

Client Served

Rating: 5

Great non-profit, puts money towards cf education and research.
Wonderful!

2

Volunteer

Rating: 5

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

2

Professional with expertise in this field

Rating: 5

I work with the health care professionals that care for people with cystic fibrosis, and occasionally the families with loved one with CF. In my experience, CFRI has provided the CF community with valuable resources in the way of fundraising, educational conferences, and support. I look forward to continue working with CFRI in the future.

2

Professional with expertise in this field

Rating: 5

This is a fine organization which we have supported for over 20 years. Although CFRI is in California and the Cystic Fibrosis Pharmacy, Inc. is in Florida, we have felt a very close kinship to the organization, the principles on which they stand, and their kindness and caring for others. Their yearly conferences cannot be beat for clinical information and comraderie. I am deeply impressed with the caliber of the research that they support and their dissemination to the professionals at their meetings. One of the most touching items of their agenda is the yearly Memorial Service which is a must for us to attend as we have known many of the patients over the years. We plan to continue to support their efforts for many years to come.

1

Board Member

Rating: 5

As an allied health care provider for adults and children with CF for the past 30 years, I have nothing but great things to say about CFRI. The education and support they provide to families is second to none. CFRI holds themselves to a very high standard, in conduct as well as transparency. Their commitment to supporting basic research and evaluating each proposal is exemplary. CFRI fills a niche that other organizations do not in providing safe environments/access for the educational and psycho-social benefit of those affected with CF.

1 Mike113

Volunteer

Rating: 5

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!

1

Professional with expertise in this field

Rating: 5

I have had 40 years of experience with non-profits that support biomedical research, in the capacity of advisor, grantee, and reviewer. I've been involved in these capacities with CFRI for more than 10 years and I have to say that t hey are one of the most efficiently run groups I've worked with. They support patients, families and research scientists and are incredibly dedicated and effective at what they do. I

1

Professional with expertise in this field

Rating: 5

As a physician caring for children with CF I have nothing but admiration for this organization. The inclusiveness and truly patient and family centered approach that marks the conduct of their annual meetings is a model for all such organizations. Their commitment to fostering high level and innovative research is no less praiseworthy. Though I am certainly a fan of what the CFF has achieved, the CFRI fills a niche that other organizations do not in the direct access those actually affected by the disease have in every aspect of the CFRI's operations and events. Bravo.

1

Client Served

Rating: 1

Their mission statement is a good one, but not all of their employees abide by it. Their director couldn't spend 10 minutes to fix a mistake to help someone in the CF community.

1

Volunteer

Rating: 5

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

2 Jereme P.

Client Served

Rating: 5

I have been working with and served by CFRI since I was 7. They are a great non-profit that makes sure to put the people they serve before the "business." They make sure to have clients on the board so that the client point of view is always being voiced. At first I was served by them mainly because of the wonderful camp they held every summer for kids with Cystic Fibrosis and adults with CF to mentor the children. As I grew up the camp changed to a Retreat where teens and adults could share their experiences and learn from each other. It is one week where we are surrounded by others just like us. It is such a great experience. Also as I grew up I was asked to speak once at the conference that is geared more towards professionals and parents to a degree in the field of care of children and adults with CF. Also those that are currently researching items that could help the CF community. Often it is the researchers themselves that are supported by CFRI's grants. I have used the other CF non-profits and they all do some good for the CF community but in my opinion CFRI does the most for the CF community with what they have.

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Client Served

Rating: 5

I have experience with both CFRI and CFF and I would recommend CFRI any day of the week. They truly care about the CFer and our well being. They do whatever they can at anytime for anyone effected by CF. I have been associated with CFRI in some fashion now for over 25 years. They sponsored the CF Camps I went to as a kid, and then the Adult Retreats as I got older. They also sponsored the CF Conferences for not only those with CF but also our families and doctors. I have had the pleasure of speaking at the Conferences and they are highly informative and also an eye opener to many of the professionals there. The Retreats are great places of support for those with CF and our loved ones. Because of the Retreat my wife has had lots of support of others that have dealt with having someone with CF they love. She knows so many more people she can go to for advice because of CFRI. If it wasn't for CFRI most CFers would never get to meet others with CF face to face any more. CFRI not only makes sure that they support research but they actually support those of us dealing CF day in and day out.

2

General Member of the Public

Rating: 5

One of my favorite organizations! They do so much for the CF community, including providing a sense of community. There aren't enough words to say what they mean to me.

2 Darlene Batchelder

Client Served

Rating: 5

Our son was diagnosed with cystic fibrosis just before his first birthday in 1989. Our doctor immediately referred us to CFRI as one of the few organizations committed to patient/parent education and improved care. I believe that the information I learned over the years, attending conferences and over the table as a volunteer packaging Mother's Day Tea invitations or processing donations, has kept my son in good health. Through CFRI, it's events and newletters, I was always up to date on the latest therapies and research. I was constantly heartened by the new of amazing research going on around the world. I was optimistic, as a result, that with commitment, discipline and good care my son could live a full life. He is now 25, working full time at a job (with insurance!) he enjoys, has purchased a home, and best of all lives independently and stays well. I'm convinced this would not be the case without CFRI, an extraordinary resource for parents and people with CF.

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2

Client Served

Rating: 5

My son, diagnosed with cystic fibrosis at one, is now 23, holding down a demanding full time job, owns his own home and is healthy for someone with CF. I am crystal clear that this would not be the case had it not been for a long time connection with CFRI! This organization bridged the information gap that Stanford Hospital and CFF could not. They provided regular opportunities to brainstorm with other CF parents to discover what works, a newsletter that provides the latest on CF research, and a sense of a wider community supporting us as we raised our son. I can't begin to imagine life without CFRI, its many volunteers and donors (individuals and drug companies). As a result of my involvement with this organization I was an educated parent, a powerful advocate for my son's care, AND I had a sense of possibility and hope without which we would have suffered mightily as a family. I cannot acknowledge this organization enough - there aren't enough good words to describe the dedication and contribution of this organization to our lives.

Review from Guidestar

2

Volunteer

Rating: 5

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.

2 Brindie G.

Client Served

Rating: 5

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"!

2

Donor

Rating: 5

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.

2

Volunteer

Rating: 5

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.

2 Terry36

Volunteer

Rating: 5

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

3

Client Served

Rating: 5

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.

2

Volunteer

Rating: 5

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, [email protected]

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Volunteer

Rating: 5

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.

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2

Donor

Rating: 5

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.

2

Volunteer

Rating: 5

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.

2

Volunteer

Rating: 5

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.

2

Volunteer

Rating: 5

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.

2

Volunteer

Rating: 5

CFRI has a 30+ year history of serving the cystic fibrosis community including patients, parents, caregivers, siblings, relatives, and friends in the SF bay area. CFRI is unique in its ability to not only provide support to both support to the patient and caregiver communities but also to fund a diverse portfolio of basic research projects including fellowships and peer reviewed research projects. CFRI is run by people with the highest integrity and commitment. It is a pleasure to volunteer and be a part of the CFRI community. CFRI is also very focused on making sure that its overhead stays low and that its funds are spend as wisely and efficiently as possible.

2 Sanjeev B.

General Member of the Public

Rating: 5

I found out about CFRI through a grandmother who was crusading for her CF striken grandchild. I attended 2 conferences in 2011 and 12.

This is one of the hidden gems, working relentlessly for the cause of CF. Their 2 day annual conference and camp are an amazing forum to meet, interact with the best minds in the business. I have learnt a ton from this organisation which I am sharing with other families as we all cope with the devastating effect of CF and hope for a cure one day.

Sanjeev Bode Dallas TX

2 Alice N.

Volunteer

Rating: 5

CFRI is a great organization with a wonderful staff. I fortunately got the opportunity to help them on a project last fall. I helped verify the websites on a brochure that would be sent to all CFRI members and families so that they could learn more information about CF. As small as this project may seem, it held a wider picture. This brochure would answer the questions to all those with CF, concerned about what more they could learn about their conditions. Aside from this project, I've been put on many other projects that would overall carry out the goals of CFRI to assist and educate the community.

I truly enjoy coming back to help Mary and David with the tasks that add to their mission statement and CFRI's mission statement.

3

Board Member

Rating: 5

Once upon a time a little princess was born to her loving parents. She was breathtakingly beautiful with ruby red lips curled into a smile, creamy skin, wavy dark brown hair, long legs, and tiny hands with the most perfect little fingers. Life was perfect! The princess was taken home and for the first month, life in the kingdom was a bit unsettled. The little princess was hungry all the time, wasn't gaining weight, and never slept much. Her worried parents sought the advice of the royal physician. "All is well with our princess," he declared. "She just needs more to eat. You must give her some formula." At that time, the royal physician did not even entertain the thought that the princess was truly ill, and that her symptoms were consistent with Cystic Fibrosis. She was simply too healthy! Her parents added formula to her breast milk diet and soon the little princess wasn't crying much, but she was still eating all the time and gaining weight slowly. Over the next 20 months, life was delightful for the princess and her parents. She grew, slowly, into a chubby-cheeked toddler who doted on Pumpkin Bear, her beloved brown teddy bear, and she brought joy, laughter and love to all who knew her. The princess, at age 22 months, seemed to be thriving until one day when she fell ill with gastrointestinal problems. A dark cloud covered the kingdom while her worried parents anxiously awaited the results of a 'sweat test' -- a test that the royal physician ordered to determine if the lovely little princess had Cystic Fibrosis. When the test came back positive, the kingdom was drowning in tears shed for their precious princess because her parents had been told she would be lucky to live to be 5 years old. "That cannot be" her parents declared. They devoted themselves to giving their princess the best care possible. Her fifth birthday came and went and the princess was healthy in spite of the dire prediction by the specialist. The kingdom celebrated joyously and they gathered in Monterey to watch their darling princess ride one of the most exquisite horses in the CFRI Parade of Champions. The beautiful and kind princess has grown and married, and at almost 29 years old, she has celebrated many happy and healthy years punctuated by some very bleak years where she had a liver transplant at age 12 due to Cystic Fibrosis killing her liver, followed by several years of life-threatening lung infections brought on by taking the immuno-suppresion drugs needed to prevent her body from rejecting her liver. These necessary drugs enabled deadly opportunistic bacteria and fungus to grow in her CF lungs. Life was grim for many years. With the advice and support her parents started receiving from CFRI when the princess was 4 years old, her parents became knowledgeable about their daughter's disease and skilled at navigating the medical world so their princess could live a long and healthy life. For nearly 25 years, the princess and her parents have been involved in a supportive and caring lifeline relationship with CFRI. Throughout the years, the staff and other families with children afflicted with CF who also consider themselves part of the caring community created by CFRI, have always been available to discuss the latest treatment options, to provide general CF education materials/conferences/discussions, and to provide that much-needed shoulder to lean on in times of crisis. CFRI has created a true community of compassionate, caring and knowledgeable individuals, medical professionals, volunteers, staff, and board who are fiercely dedicated to providing education, research, advocacy, and support to individuals with CF and their families. CFRI reaches out to those in need - always providing pertinent health education materials, referrals, and answers. They provide seed money for cutting edge research aimed at developing new drug therapies and ultimately a cure for this life-shortening genetic disease; and they do all of this with a small staff and without a large expense budget. Their financial commitment to CF research and education is remarkable. With the guidance of their dedicated executive director, Carroll Jenkins, CFRI is solid financially and growing thoughtfully and strategically so that they can meet the needs of the CF community. CFRI is truly a GREAT Nonprofit!

2

Client Served

Rating: 5

The staff at CFRI have one consistent passion: serving the cystic fibrosis community. This is evident in everything they do - the educational webinars they produce, the conferences they sponsor, the medical research that they fund. Unlike many other nonprofits that seem unfocused, CFRI is lean, organized, and effective -- an almost business-like model (with a big heart!) that allows them to focus on their core competencies.

2 Julie111

Advisor

Rating: 5

I have participated in CFRI as a client served, a volunteer, a Board member, and an advisor (not all at once) for the last 25 years. I have never encountered a group more passionate about their cause or more professional in going about achieving their goal of helping patients, families, and caregivers dealing with cystic fibrosis. The provide quality educational events and are always available to answer questions and help in any way they possibly can. They do a remarkable job fundraising, and ensure that the money raised is directed toward quality research, always directed at improving the lives of those with this devastating disease.