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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

167 Stories from Volunteers, Donors & Supporters

2

Volunteer

Rating: 5

In 1982, our granddaughter, Lindsey, was born and four or five months later we found out she had cystic fibrosis. She was not thriving and her weight was down considerably. We were devastated, but started learning about the disease. I looked up Cystic Fibrosis in the phone book and called the number. It was Cystic Fibrosis Research, Inc. in Palo Alto, CA (now located in Mountain View, the city next to Palo Alto). They had doctors to help people know how to take care of children with CF, and we felt after attending some of their meetings that this was a worthwhile organization who had research scientists working on the problem to find a cure. Over the last 30 years, much research has resulted in getting much closer to a cure; but not only that, they have scientists (companies) who have developed enzymes, medications, etc. to help the patient stay well and lead a much more normal life. I have been ever grateful for this organization and when we lived in San Jose, CA I was invited to serve on the Board of Directors, which I did for a year or so and our family helped raise much needed funds by doing long distant bike rides and getting sponsors. My husband did three 500-mile bike rides down the coast of California from San Francisco to Huntington Beach. Then when my husband was 59 years old he did a double century (200 mile) bike ride in one day from San Jose to San Luis Obispo, CA. We also sponsored a skate-a-thon at our roller skating rink in San Jose. I know the money that was raised was spent wisely, and I am very thankful that my granddaughter is now 30 years old, married, and has a two-year old daughter of her own. Thanks, CFRI for helping to give her a nearly normal life. My husband, Ed, passed away on August 12th of this year, but I know I speak for both of us and our entire family that we appreciate and love those who serve as volunteers and contributors to this great organization. Barbara Jensen, Draper, UT

2

Client Served

Rating: 5

CFRI transformed my life 22 years ago when I first walked through its doors. I'd be dead without the knowledge and social support i've gained through the years from CFRI. I learned more about how to live with CF from their education activities than from all my health care providers together, and more than any average CF Education Day at my hospital. The Annual National Family Education Conference is like no other--- a truly remarkable place to learn about research, hope, and gain support from people like me. I became a scientist because of what I learned at CFRI. And the staff is exceptional. So are the volunteers whose love, support and compassion have lifted me up in the most difficult time. The staff is made of fine human beings with ethics, integrity, determination, compassion and transparency. No one receives half-a-milion-dollar-plus salaries plus bonuses from pharmaceuticals. This is honest to goodness non-profit at its best. Their mission to fund research occurs at a grassroots level and they make an effort to inform funders about what's going on. The CFRI Retreat offers the only CF educational event for CF teens and young adults-- with the safest possible cross infection protocol. They recognize that isolation and depression is more damaging that a tiny risk of cross infection--- which is minimized to the greatest degree. Carroll Jenkins is a remarkable executive director, who treats each person with CF and their family as if they are the only ones in the world with CF. More importantly, she inspires hope and makes me believe they are all working to help me thrive with this illness. I highly recommend CFRI and give it five stars.

Previous Stories
1

Volunteer

Rating: 5

I've been part of CFRI for 20 years. I was a scared and lonely college student when I first met the staff at CFRI who welcomed me like family. They taught me more about managing my CF than what my doctors ever taught me. Mostly they provided supportive education and resources, as well as a network of friends at their educational camp, retreat and conferences, who uplifted me through the years and gave me confidence that I could get through this disease. CFRI offers the personal human touch and everyone on staff truly CARES about the lives of people with CF. I have volunteered for their Board, Camp, Retreat, Conference, and other committees. They use their funds very responsibly and the staff works very, very hard to raise funds for research, and for programs that directly impact families. I have such confidence in this organization so fully, that I've been moved to dedicate my time, energy and life to serving people with CF through CFRI. This organization is smaller than the CF Foundation and wants a cure to be found just as much; but CFRI is much more engaged in the lives of people fighting CF every day-- today.

Review from Guidestar

2

Client Served

Rating: 5

CFRI has a booklet called "Cystic Fibrosis in the classroom" that was instrumental in helping me communicate the things my daughter needed before entering kindergarten. Ive read similar pamphlets and this one was written so much better. Also the person I spoke to was very informative, providing me with further materials and getting them to me 2 days later!

2 Jim_37

General Member of the Public

Rating: 5

CFRI is a real Godsend! Great group of dedicated professionals!

2 Eric22

General Member of the Public

Rating: 5

CFRO is a great resource for any new or longtime cystic fibrosis patient and family. They provide much needed information and support to the CF community.

2 Anabel

Client Served

Rating: 5

I have cystic fibrosis. When I moved to the San Francisco Bay Area 20 years ago, CFRI became my second family. The volunteers and staff are personable, loving , compassionate, knowledgable about CF and incredibly resourceful and supportive. Twenty years later, I can honestly say I would not be alive without CFRI- they have taught me so much with their annual family educational conference (things not even my doctor knew) and have offered an invaluable number of skills ,wisdom and emotional support during their support groups, educational seminars and annual summer retreat for people living with this very challenging disease. CF remembers those we have lost, supports those struggling with the emotional and physical aspects of the disease, and inspires hope by funding critical research to find a cure. No other existing CF non-profit organization has supported me in any way CLOSE to the way CFRI has. Please support CFRI - unlike other national CF organizations, it is not just about fundraising and research for cures that will come decades from now; it is about supporting families in the here and NOW dealing with ALL aspects of living and surviving CF.

Previous Stories
1

Board Member

Rating: 5

I have been a CFRI Volunteer, client served , professional in CF, for over 10 years. CFRI has been a gem in my life and is truly one of the reasons I am still alive with CF. It has provided me a home away from home, with wonderfully supportive staff, volunteers, services and most of all HOPE with its funding of critical research and its sharing of crucial knowledge and education needed to fight this challenging disease. CFRI is unique from other CF organizations by its personal nature, its grass roots ability to cater its services to those living with CF NOW, providing emotional, social, psychological and practical support to families and patients living with CF,while doing an excellent job of fundraising and supporting vital CF research that will someday improve our prognosis. For over 20 years CFRI has beckoned me to become involved and stay involved and I cherish this organization deeply.

Review from Guidestar

2

Professional with expertise in this field

Rating: 5

Compassionate group devoted to advancing care and treatment of patients with CF.

2

Professional with expertise in this field

Rating: 5

CFRI is an amazing organization. I am a healthcare provider on a CF team and CFRI provides incredible research and support for patients, families and caregivers involved with Cystic Fibrosis. They continue to stay on the cutting edge of medication research and the search to find a cure.

2

Professional with expertise in this field

Rating: 5

A great resource. Especially for those outside of the USA.

1 levygang

Client Served

Rating: 5

CFRI has been one of the most important resources in our lives. As a mother of a child with CF, CFRI has provided more intelligent information on care, medical options, and all around tips on how to live with this horrible disease. I am so grateful for their existence!

Previous Stories
2

Client Served

Rating: 5

As the mother of a daughter with Cystic Fibrosis, I can't begin to thank CFRI for the support it has given to my family and the CF community. The level of information and support for the entire CF community is outstanding. I am so grateful.

Review from Guidestar

3 kath.flynn1

Volunteer

Rating: 5

CFRI saved my life after my son was diagnosed with CF. As time went on, and I learned all I could from them about new treatments and care for children with CF, it really impacted my son's life. He's a healthy 21 year old getting ready to graduate college. Thank you CFRI!!

Previous Stories
1

Volunteer

Rating: 5

CFRI is awesome. Donations fund research not overhead! Support is there whenever you need it. Kindness and community abound whether you live one mile or 3,000 miles away. The educational conference for CF adults, parents and caregivers is of particular interest, and always exceeds expectations. I became involved when my son was born with CF 19 years ago. The people at CFRI got me through some tough times and provided the education I needed to be the best possible parent and advocate I could be for my son.

Review from Guidestar

4

Volunteer

Rating: 5

If there is anyone out there interested, I have the ability to help this charity raise money for their cause. JulieLyons4@gmail.com

2

General Member of the Public

Rating: 5

Cfri does monthly meetings which are live streamed so everyone can attend. Their yearly retreat changed the life of my daughter. Ty's nonprofit is amazing!!!

2 Sue_30

Volunteer

Rating: 5

My association with CFRI spans nearly 25 years. Our 28-year-old daughter was diagnosed with CF when she was 22 months old, but it wasn't until she was three-years-old that we returned to the Bay Area and began to volunteer our time fundraising for CFRI. We will never be able to match what we have raised to what they have given to us in research/information/education and a shoulder to lean on. They continue to empower and give hope to the parents of children with CF, the children/adults with CF, the family and friends of those with CF through the sharing of knowledge about the disease, resources for care, and continued funding of medical research and education programs. As a former board member, I know the staff and volunteers are totally invested in providing a better future for those living with Cystic Fibrosis, and it shows in their heartfelt relationships with the CF community.

3 Jo__5

Client Served

Rating: 5

My son was very sick for 5 or 6 years and the doctors at Children's hospital must have tested him for everything known to mankind. Nothing ever panned out. Then they decided to test my son for Cystic Fibrosis. That turned out to be the problem. We were devastated. We were searching for an answer with a solution, we found Cystic Fibrosis instead. Since my son started going to see the doctors at the Shreveport Cystic Fibrosis center, his health has improved, markedly. Instead of 6 to 7 hospital admissions a year, he has not been admitted in over a year. Because of Cystic Fibrosis Research Inc and my son's Cystic Fibrosis Care Center, we have hope for the future. A future with many years of accomplishments that would not have been possible just 40 years ago.

2

General Member of the Public

Rating: 5

I am the grandmother of two children who have cystic fibrosis. When our granddaughters were diagnosed with cf, I had no idea what it was or how it would affect their lives. CFRI has has been a wonderful resource for understanding the disease, as well as keeping up to date on the treatments that are developing.

2

Volunteer

Rating: 5

CFRI offers a personal touch to anyone who calls looking for support or information about CF. The staff approaches everything they do with a sensitivity towards others. If you have CF or are a relative of someone with CF, they are there to educate and support you, through their phone calls, newsletters, monthly informational meetings and their annual conference. Though in California, they are still supportive of anyone who calls; also all are welcome to attend the conference which is held in the summer each year. Latest research advances, support groups, and clinical presentations are just a taste of their session offerings. With over 20 years of volunteer experience with the group, I still look forward to giving my time and support to them each year.

Previous Stories
1

Volunteer

Rating: 5

I've been a volunteer at CFRI for many years, serving on newsletter and conference committees and as a Board member. I was introduced to this organization by a friend whose son has CF. I have a niece with this disease so my motivation to participate in their activities is quite high. Anything I can do for her, I will.

One of CFRI's unique strengths over other CF organizations is its personal network of loyal and knowledgeable parents, volunteers, medical professionals, researchers and others, both with CF and without. There are so many resources available if one chooses to partake of CFRI's monthly education events as well as their annual educational conference where CF specialists are brought in each year to share their insights and current understanding of CF. If you choose to contact CFRI for help in dealing with this disease, you will not be disappointed. The staff will be helpful, professional, courteous and just plain NICE. And nice is hard to come by these days. What more can you ask for?

Review from Guidestar

6 Craig T.

Volunteer

Rating: 5

As a new parent, Cystic Fibrosis completely changes every aspect of life when it arrives, uninvited and completely unexpected (we've been fighting this disease for 28 eight years now). Cystic Fibrosis Research Inc (CFRI) has always been there with support, timely information that is extremely valuable in fighting the disease, and resources, resources, resources to help overcome each battle along the way. CFRI has been invaluable in our lives living with CF, and we appreciate the people and the organization beyond words. CFRI also brings the world of CF fighters together, allowing for crucial exchange of information, as well as encouragement and community.

1

Client Served

Rating: 5

Outstanding educational and advocacy resource! CFRI are experts in all things Cystic Fibrosis.

1

Client Served

Rating: 5

As a carrier of the CF gene and sister to an adult with CF, this organization keeps me informed on new research, events for CF survivors, and supports efforts to find a cure for this genetic disease. This organization is the primary source of information on Cystic Fibrosis, one of the most frequently diagnosed life-limiting diseases of children. Keep up the great work!

2

Client Served

Rating: 5

As a parent of a child (now an adult) with Cystic Fibrosis I have come to depend on Cystic Fibrosis Research, Inc for my continued up-to-date information on this disease. While I am not able to attend their events in person I follow their posting online on a regular basis and watch their videos. This organization has become my "partner" in keeping my CF knowledge current so I can be the best possible caregiver to my daughter.

3

Volunteer

Rating: 5

I am writing again to support CFRI. I have been involved with CFRI for 30 years now. It has been my family's support while dealing with CF. It is a great and caring organization that offers connection, education, ways to make a difference and a community for all who get involved. Kudos to all who are the backbone of CFRI. Thank you for all that you do.

Previous Stories
2

Volunteer

Rating: 5

Our family first became involved with CFRI in 1983 following our daughter's diagnosis with cystic fibrosis. I served on the Board for 10 years and my husband has served on the Research Advisory committee as a member or adviser since its beginning. Our daughter with CF grew up going to CF Camp sponsored by CFRI and is currently serving on the Retreat Committee. Our other daughter has also volunteered. We have attended many conferences and I have served as a writer for the newsletter. We all feel that our CFRI community has been a vital part of our lives. The support, information and companionship that we have received as a result of our involvement and the existence of CFRI has been invaluable.

CFRI has always been true to its mission with kindness to its community and with thoughtfulness and intelligent direction. There is no other organization in this country that serves its community with the warm support and ability to connect and educate patients and families like CFRI. It is a beacon of light to those that live near by as well as many other who live far.

We are proud of the research CFRI has supported and the annual conferences that bring the community together. I encourage all CF people I meet to contact CFRI. CFRI deserves all the the support and kudos that it receives.

Review from Guidestar

3

Donor

Rating: 5

I first attended a CFRI event in 1990 and have followed/visited/donated at various times since then.
CFRI went throught a change in directorship several years ago and, unlike leadership transition in the many non-profit organizations I have been affiliated with, they continued to build strongly on their original vision and previous accomplishments.
One of the unique aspects of CFRI is their blend of the professional and the personal. I have dropped by their office with no advance notice or phoned up out of the blue, and I am always given the same patient attention as if I had an appointment. This sensitive orientation to individuals is important (almost unheard of) in health care organizations and doubly so where the stresses of cystic fibrosis are often immense on consumers and their families.
Having read more CFRI newsletters than I can remember, I also appreciate the organizational transparency. Donations, annual expenses,and the fiscal aspect of the organization is always clearly spelled out. They prioritize solidly: research and service first and salaries and overhead second.
I could write more, but I will conclude by simply saying CFRI is a special organization with a great history and a dynamic vision for the future. I am proud to be affiliated with CFRI as a loyal donor.

2

Volunteer

Rating: 5

Cystic Fibrosis Research, Inc., (CFRI) is an excellent organization with an equally impressive staff. CFRI is dedicated to advancing education about CF and funding research to help advance treatments. I have found CFRI to be one of the best non-profit agency of which I have been acquainted.

Much of the thanks for the greatness of this organization stems from two sources: (1) the amazing, courteous, and helpful staff -- spearheaded by Carroll Jenkins and David Soohoo; and (2) dedicated members of the community that rally together under the CFRI banner.

Our family has benefited immeasurably by CFRI. From providing pamphlets regarding CF in the classroom to coordinating the annual CFRI conference, CFRI has provided timely and useful information that have aided my family. In addition to this invaluable information, CFRI has help promote CF research.

As with others, I just wish that I had more (time and money) that I could contribute. For those who can help CFRI, rest assured that your funds are being used to serve those coping with cystic fibrosis, their families, and friends.

Review from Guidestar

3

Volunteer

Rating: 5

I was a founding member of CFRI back in the 1960's and had several children with cystic fibrosis who, with me and my wife, benefited from information and moral support this organization has provided. And of course CFRI has, through its research grants, substantially contributed to the ever-ongoing improvements in the treatment of CF patients and understanding of the disease. Our first two children with CF, born in the sixties, died before they were six; our last was twenty-one. Many now are twice her age. Thanks in part to CFRI, the life expectancy goes up and up.

Review from Guidestar

2

Donor

Rating: 5

On April 9, 2011, I will be 80 years old, and I have cystic fibrosis. Of all the organizations to which I donate, in my opinion, the CFRI is the best of them all. They are conscientious, dedicated, efficient, and successful. Their program to help those of us with CF, and to help the public understand the disease is excellent, and is not equaled by any other cystic fibrosis organization. I recommend CFRI to CF support groups on the internet, as CFRI makes a difference in the lives of those of us who have cystic fibrosis. I certainly am thankful they exist!

Review from Guidestar

2

Volunteer

Rating: 5

I have been a volunteer with the Cystic Fibrosis community for 29 years, both at a local hospital and as a participant in CFRI activities. i first learned about CFRI from the CF patients and parents who created the organization in 1975. CFRI's primary focus is to help fund new CF research projects focused on understanding the many bio-physical aspects of CF. Their other focus is to provide education and support for the CF patients and their families.

The annual CF conference brings together top clinicians/researchers from around the globe to describe their insights into the evolving research and best-practices to the CF community.

The conference also fosters a sense of community through their focus sections which allow patients and families to share their stories about how they deal with the myriad aspects of living with CF. From my perspective, the building and maintaining this sense of community is CFRI's most important mission. The research and focus on "best-practices" have obviously improved the clinical care and life expectancy of CF patients. The strong sense of community identity established withing the focus groups has strongly improved the societal well-being of the CF patients and families. No patient or family need believe they are alone in their struggle with the realities of CF. Each patient and family can be encouraged and motivated by the successes and insights provided by their fellow patients and families within the CF community. CFRI is a major player in this effort.

2

General Member of the Public

Rating: 5

I have CF Adult, diagnosed in 2008. CFRI has been very informative and is up-to-date, always. Many friends prefer this organization for their efficiency and personal assistance over several organizations that assist Cystic Fibrosis patients. They are very prompt when responding to a question, they sponsor several informative workshops throughout the year that are on a patient/parent relevant and at the patient's parent level of understanding. This is extremely beneficial for information and expert care. They work very hard and are very dedicated to this serious illness and can make a difference in life or death. I would contact CFRI as my first choice for information and care.

Review from Guidestar

3

Volunteer

Rating: 5

I have been a lay person volunteer on CFRI's Research Advisory Committee for over 30 years. I have participated in careful selection of worthy medical research projects to fund with our precious donations. Everyone on the committee is dedicated to the best outcomes of the pursuit of medical breakthroughs.
CFRI attracts the best persons and cherishes their time.

Review from Guidestar

3

Professional with expertise in this field

Rating: 5

My son Tony spent his young life attending CF camp in Oregon, becoming a counselor as he grew into an adult. Then The CF camps here had to close due to the deadly contagions that sepacia brought. Those camps were his anchor and a vital link to dealing with his disease. He and his young friends dealt with issues of life and death sharing things most of us don't have to face for decades.
Then after some years, he faced the inevitable and had a Transplant at Stanford. There he met Ana and learned about CFRI and the conference and camp they sponsor every year in California. CFRI gifted him with a scholarship.
I still hear him coming back from that experience:
"Mom, I can't tell you what this means. It's so incredible to be able to talk and share on this level again.. I feel like I've found such meaning in life with these people." He went on from there to lead a California team in the Transplant games...a highlight in all our lives. And he brought the beautiful, inspirational people he met at CFRI into our lives. We have been blessed by them, long after losing our son..
Last summer we traveled to the camp sponsored by CFRI. We saw young adults laughing and creating, living life fully as our son did.
They invited us to share in a few of their sessions. Those few hours enriched our lives beyond measure.
As my husband said then to these incredible young people: You can't be ordinary. You're "exrta ordinary"...and we are so blessed to have you in our lives.
CFRI continues to help make all that possible. They truly touch and change lives.

Dolores Diprofio Creede

Review from Guidestar

3 Sally K.

Client Served

Rating: 5

My son was diagnosed with Cystic Fibrosis at the age of 6 months back in 1983. CFRI was a source of hope and encouragement to me than, and has continued to be a source of encouragement to me through the years. When my son was younger, he went to the camps CFRI held ea ch summer. As he got older, he attended the annual retreats that CFRI funds. CFRI puts on an annual educational weekend for those with CF, parents,siblings, and friends. These have been an invaluable source of education for the CF community. CFRI also funds some great research. This organization has mad a difference in my life, and countless others.

Review from Guidestar

3

Client Served

Rating: 5

Hi! I'm an italian mother who have a child aged 6 diagnosed by screening when he was born. I discovered CFRI at this time and during the last 6 years I always received CFRI's newsletter to know how CFRI do for patients and their family.
Now I am a member of Lega Italiana Fibrosi Cistica, the "italian sister" of CFRI, and the relationship with CFRI is very important for me to see what we can do and how we can do to solve our common problem.
Having comparison with different reality is always very important.
Thank you CFRI.

Review from Guidestar

3

Professional with expertise in this field

Rating: 5

When my daughter was diagnosed with CF, friends who also had a child with CF told us about CFRI. It was the beginning of a long relationship, which eventually resulted in me changing my field of research to CF. CFRI was incredibly supportive as I made the difficult change--I couldn't have done it without them.

In the many years since, they have provided a constant source of information and support to the local CF community--and eventually their efforts have affected people all over the world.

Review from Guidestar

3 Sadie A.

General Member of the Public

Rating: 5

When I was born, my parents were told that I would not live to graduate from high school. With help from organizations like CFRI, I am a fully independent, 24-year-old college graduate. I participate in CFRI's "Mother's Day Tea" fundraiser every year to help raise much needed funds and awareness for CF. I have also attended several of the educational and supportive events hosted by CFRI. This organization makes an enormous impact in the lives of families affected by CF.

Review from Guidestar

3

Client Served

Rating: 5

Anthony would turn 42 this year. He lived with cystic fibrosis, was granted 2+ years, post double lung transplant, and thanks to CFRI, and Anthony's involvement with the people there and at the SUMMER CAMP, sponsored by CFRI his memory lives on. This is no small thing!
His mom and I were invited to attend the candle lighting memorial at the CFRI SUMMER CAMP last year. To sit with a dozen CF campers as they lit candles to honor the memory of hundreds of their friends/former campers moved me to tears. No one that young should have that much experience with personal loss!
CFRI camp helps young adults deal with the reality, not as victims, but by their demonstration of compassion and acceptance to one another that they are survivors, miracles, and extra-ordinary people.
I am changed, honored, and blessed by the people of CFRI.
Thank you CFRI.
Thank you Anthony.

Review from Guidestar