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

Programs: We fund cystic fibrosis research regionally and nationally and currently supporting 5 post-doctoral fellows and support 3 CF research projects at Stanford, UCSF, UCSD, CHORI, SDSU. We host an annual educational conference, attracting renown speakers and participants from across the country. We issue three newsletters per year, free of charge to over 15,000 constituents. We also hold an annual Teen and Adult retreat for the CF community. We provide on-going support groups for teens and adults with CF and for parents and caregivers of children with CF. We oversee and information based website which is accessed by over 5,500 people each month. A Caregivers support program has recently been launched for the CF community. We provide direct information and referral to all in our community. Educational materials are available and free to the community.

Community Stories

49 Stories from Volunteers, Donors & Supporters

4

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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3

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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1

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!

1

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.

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2

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

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.

1

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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2

Board Member

Rating: 5

I first learned of CFRI in 1989, when my daughter was born and diagnosed with cystic fibrosis. My husband and I attended our first conference the following year and have been “regulars” ever since. The knowledge, as well as the comfort, we have received over the years has allowed us to be informed advocates for our daughter. The cutting edge research that CFRI funds annually has led to significant breakthroughs in the treatment of CF and as a result benefits our family and the entire CF community by providing hope. The outreach and support that the kind and dedicated staff provides is outstanding. I joined the Board of Directors five years ago and know first hand how dedicated the CFRI staff, volunteers and researchers are to making the quality of life better for those living with cystic fibrosis.

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

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

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

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

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 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.

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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

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!

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

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 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.

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