Cystic Fibrosis Research Inc

Rating: 4.95 stars   159 reviews

Nonprofit Issues:

Address:

1731 Embarcadero Road Ste 210 Palo Alto CA 94303 USA

Mission:

The mission of Cystic Fibrosis Research Inc. is to fund cystic fibrosis research, to offer educational & support programs and spread awareness of cystic fibrosis. What sets CFRI apart from other CF organizations is our commitment to provide educational and personal support to those living with cystic fibrosis and their families. It has been shown that informed and knowledgeable patients maintain healthier lives. We believe that the information and assistance that CFRI offers can help reduce much of the emotional and physical distress associated with this prevalent, life threatening genetic disease.

Programs:

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

2015 Top-Rated Nonprofit
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More Info

650-404-9975
www.cfri.org

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Reviews for Cystic Fibrosis Research Inc

Rating: 5 stars  

2 people found this review helpful

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

 
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1 previous review
Rating: 5 stars  

3 people found this review helpful

CFRI is a non-profit agency that helps those with cystic fibrosis, their relatives, friends and caregivers get educational support, support basic research and learn how to cope with the rigors of this genetic disease which has no cure as of now. My 20 year old grandson and our family have benefited greatly from their work. Progress is being made due to the many scientific advances in the understanding and treatment of CF. CFRI educates the larger community about cystic fibrosis hoping to involve them in the search for a cure. It's booklet to be used in the classroom informs teachers about the disease and clarifies the need for certain arrangements to be made for a student with CF. Their annual conference updates the CF community and professionals of the newest advances along with help with psychosocial problems. Their support groups fill a need to help relatives/partners/siblings of the newly diagnosed through to those with CF reaching the later years of adulthood. Their strict cross-infection guidelines allow those with CF to participate if they have an approved sputum culture and medical release form signed by their CF doctor.

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

I would hope that more and more people affected by CF would join the volunteer ranks of this organization. The small staff is dedicated to working long, hard hours to ensure that those with CF live long, prosperous and productive lives.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

 
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1 previous review
Rating: 5 stars  

2 people found this review helpful

I have been involved with CFRI since our grandson was diagnosed with CF just before turning 3 years old. Because of its sharing of information about CF through their annual summer conference, assisting those with cystic fibrosis and their caregivers, funding research to lead to a cure, and the wonderful people involved (staff and volunteers), I have served on the board in the past, participated in their annual fund raiser, served on the conference committee and helped in the office. This organization helps people stay tuned into the latest developments concerning the disease. There is always a helping hand. My grandson has transitioned to a CF adult care center and has transitioned to independent living away from home in a university situation. CFRI has helped this happen.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

 
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1 previous review
Rating: 5 stars  

2 people found this review helpful

I am a grandmother of a 17 year old boy with cystic fibrosis. I have volunteered with CFRI ever since he was diagnosed at almost 3 years of age with this genetic disease. Our family was trying to find a cystic fibrosis organization to which to give a donatation in memory of a relative who died from the disease in 1969, so we found CFRI listed in the San Francisco Bay Area yellow pages!

Later upon our grandson's diagnosis, I became involved as a board member, later in other capacities. I presently am one of a group of three co-chairmen of their largest fundraiser (the Mothers' Day Tea solicitatio) and on their annual educational conference committee. I have assisted as a volunteer in the office helping out when needed. I am personally devoted to the staff and have found them to be hardworking, dedicated people who believe in finding a cure for cystic fibrosis as well as believing as we all do who help CFRI that education of the patients, parents, caregivers, partners, siblings, friends need to know that they can get the support they need for their loved one's care.

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

I have seen the organization grow through the years both with its ability to increase itssupport to finance research projects and to educate the cystic fibrosis community with its annual conference, its newsletter, and its outreach programs. The conference grows in numbers yearly. The spread of educating and supporting people nationwide and worldwide is very impressive with all its programs.

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

increase the donations, increase the volunteer base and fund more research toward a cure.

 
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Review from Guidestar
Rating: 5 stars  

1 person found this review helpful

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

 
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Rating: 5 stars  

1 person found this review helpful

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

 
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1 previous review
Rating: 5 stars  

2 people found this review helpful

CFRI is an amazing organization at many levels. It is a wealth of information, reaching out to parents of newly diagnosed children with CF (a devastating time in their lives). It helped me cope with the heartbreak of having a child with CF. I am not sure I would have survived. They fundraise to support leading edge research into CF giving us all hope for a cure. They have a wonderful newsletter full of information, sending it free to anyone. And finally, they have a huge annual conference, hosting people from all over the world, where we can go and learn all the latest in research and care. The staff is very friendly, helpful and caring. This is the most vital organization I have ever been involved with.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

 
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1 previous review
Rating: 5 stars  

1 person found this review helpful

CFRI has wonderful volunteers that have helped countless cystic fibrosis patients, parents, and grandparents for nearly 40 years. Through their wonderful annual conference attended by people around the world, helpful newsletter, and other activities, the organizations reaches hundreds. Its a privilege to be part of this. My son with CF is now 30 years old.

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

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

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

None. Great group.

 
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Rating: 5 stars  

1 person found this review helpful

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

 
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Rating: 5 stars  

1 person found this review helpful

I 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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1 previous review
Rating: 5 stars  

2 people found this review helpful

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

Will you volunteer or donate to this organization beyond what is required of board members?

Definitely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

 
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Rating: 5 stars  

3 people found this review helpful

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!

 
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Rating: 5 stars  

2 people found this review helpful

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

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

 
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Rating: 5 stars  

1 person found this review helpful

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!

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

 
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Rating: 5 stars  

1 person found this review helpful

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

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

2 people found this review helpful

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.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

 
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