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2015 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

167 Stories from Volunteers, Donors & Supporters

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.

Previous Stories
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 Ann R.

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.

Previous Stories
1

Volunteer

Rating: 5

My husband and I have been members of Cystic Fibrosis Research, Inc. (CFRI) for 34 years. It is a wonderful organization that funds outstanding CF research and provides education and support for families having CF children and adults with CF. CFRI has an excellent annual National CF Education Conference each summer and publishes an outstanding newsletter four times per year. CFRI in partnership with Stanford University has a monthly Discovery Series which is are talks given by doctors, research coordinators, scientists and CF patients; these talks are broadcast online over the Web for all to hear and call in to ask questions. In the past I have served as Board President, Executive Director and have Chaired the Mother's Day Tea, a major grassroots fundraising effort. My husband has served as Board President and is a Member of the Research Advisory Committee. We highly recommend CFRI to anyone interested in cystic fibrosis research and education. Ann Robinson

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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, marionjrojas2002@yahoo.com

Previous Stories
1

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.

3

Donor

Rating: 5

In 1961, I was the parent of eighteen month old twins and told they had a very serious and generally fatal disease. Naturally all I wanted was a cure for Cystic Fibrosis for them. Fortunately they continued to survive. In 1974 the name alone, Cystic Fibrosis Research, Inc. called me to join the newly formed volunteer group raising funds for CF researchers. That was how I could help!

Throughout thirty-eight years CFRI has continued its mission raising funds for peer reviewed CF research and education of the public, parents, and patients (who now may reach the median age of thirty-seven plus). Via newsletters, meetings, annual three day conferences with CF medical expert
speakers, .a summer retreat, devoted office staff and volunteers, CFRI keeps us up to date on all things pertaining to relevant issues and CF research.

And, YES, I'm proud to have been a member of Cystic Fibrosis Research Inc. all these years.

May the cure be found soon..

Sincerely,
Norma L. Stuckert

Previous Stories
1

Donor

Rating: 5

From the creation of CFRI by a group of volunteer parents of cystic fibrosis children in 1975 to its present combination of volunteers, office staff, C.F. parents, patients and friends I have been proud to be a member.

Review from Guidestar

2 jbstockings

Client Served

Rating: 5

Having a son with cystic fibrosis, I always look to CFRI for the latest in research. They come through time after time.

2 Jen E.

Client Served

Rating: 5

As an adult with CF, this organization has helped me tremendously with learning more about the latest treatments and helping me feel connected to others with CF.

1

General Member of the Public

Rating: 5

In 1982 our grand-niece was born and a few months later she was diagnosed with CF. At the time, life expectancy for those diagnosed with CF was in their mid-20s. Our grand-niece is now 30, married, and with a beautiful daughter of her own. The research CFRI does is priceless to the loved ones of people coping with CF. I hear lots of good things about CFRI from family members who have participated directly with major fundraising events and have served on the board.

2

Professional with expertise in this field

Rating: 5

CFRI is a truly non-profit organization operated by a small, truly dedicated, full time staff along a number of parents, patients, family members and friends who volunteer to accelerate the therapy and understanding of cystic fibrosis. As a research scientist, working on Cystic Fibrosis for the past 40 years, I have seen the organization grow from a seed of parents determined to fight the disease by investing relatively small sums of funds in strategic areas for understand the pathology of the disease and especially at the same attracting young investigators to career in this area of medicine. In my veiw, the organization is especially conscious of where the funds they receive come from and equally conscientious of how they use them. CFRI is not a large organization, but it continues to make this part of our world a better place.

2 Janice16

General Member of the Public

Rating: 5

CFRI has been a part of my life for many years now. My son, who is now, 19 years old was diagnosed with Cystic Fibrosis shortly after birth. Through CFRI, I have been able to educate myself and my son through newsletter and online video topics. They keep me abreast of the latest research and share heartwarming stories. The CF community benefits from CFRI even though we are a thousand miles away. Thank you CFRI.

1 Victoria18

Client Served

Rating: 5

CFRI has been an integral part of my life and that of my family since I was diagnosed with Cystic Fibrosis at 22 months old. Their dedication to collecting and proliferating knowledge on CF as well as funding the research that is vital to an eventual cure is essential to helping those with CF function in their daily lives and live with hope that one day CF will be a distant memory. Their executive director, Carroll Jenkins, is possibly the kindest and most compassionate woman I've ever met, going out of her way to make personal connections with individuals with CF and their families and help them in every way possible. I just can't speak highly enough of this organization.

2

Client Served

Rating: 5

We are so thankful for CFRI. They are on the cutting edge of research for this horrific disease, and yet have the time to make a personal difference in the lives of so many patients!

2

General Member of the Public

Rating: 5

Cfri has done an outstanding job of keeping me informed of important information from the latest ground breaking research to a wide variety of upcoming events and activities. Cfri have gone out of their way on multiple occasions to answer my questions via a personal phonecall. I have not been only very impressed with what they are able to accomplish with such a limited staff but also very grateful. -Dave Pastush

2

Client Served

Rating: 5

Too much to say about CFRI. They bring about great fundraisers that raise money, awareness and passion. They help to fund the clinics that give our CF children the care they need to become CF adults. Couldn't do it without the CFRI!

3 Rachel60

Client Served

Rating: 5

My daughter has CF. We don't live in CA, so I am especially grateful for all the work they do and that they make workshops and talks available online. They are very informative and help us greatly, both in our daily lives and keeping us in the loop with progresses made. Thank you, CFRI!

2 Diana F.

Volunteer

Rating: 5

The CFRI Staff is caring and concerned with helping families in very troubled times. Our gratitude for them is never ending. Thanks for being there for us

2

Professional with expertise in this field

Rating: 5

Living with CF means hours of home treatment every day. That's EVERY single day. CFRI provides much needed and insightful support to families living with CF. They make continuing education accessible to famiies living with CF. I'm happy to support their efforts. Thanks CFRI! J. Romero, LCSW

1

Professional with expertise in this field

Rating: 5

Carroll and David are wonderful leaders for CFRI. They bring passion and expertise to the CF advocacy community. They have brought unique and valuable educational and peer-to-peer programs to the CF community--patient and healthcare providers.

2

General Member of the Public

Rating: 5

When I attended my first CFRI conference, I felt like I had come home. I was welcomed by a warm, caring, compassionate and friendly staff. I immediately knew that I wanted to become involved in this organization, which isn't easy to do while living in the Midwest. But, no matter how little I was able to do for them, the staff and volunteers were always appreciative; they always make one feel valuable. CFRI is the only venue where I'm able to hear speakers talk about the latest research as well as other topics of interest to those with CF. I've often told my husband that if we could afford a home in California, I would move there just so that I could participate and volunteer more with this most impressive association.