I am the past Director of Research Development at Children's Hospital Oakland Research Institute ( CHORI). I have had first hand experience with CFRI's incredible support of our research scientists and the Cystic Fibrosis lab. Throughout several years, CFRI continued awarding grants to our CF scientists, helping them carry on with their research during challenging times when the NIH drastically cut their research budget. Furthermore, CFRI , their Executive Director, CFO and Board of Directors jointly assisted CHORI with its Summer Internship Program. This is an educational program that selects/admits high school and college students interested in pursuing a career in research, healthcare and/or science. Many of of thecstudents are under- resourced and need help with a stipend for transportation and meals. This was another program that NIH used to generously fund in the past but cut back in 2014. Our good friends and supporters at CFRI came to aid the CF lab. CFRI's generosity allowed Chori scientists admit the students who actually have CF or are from families with CF determined to make an impact in curing this life threatening disease. These students are mentored and educated hands on by scientists. They work on real projects and at the end of the course they make presentations to the entire team of investigators at CHORI+ like any PhD, they produce and create an abstract of their work. Throughout my tenure at CHORI,our CF lab received mental and monetary support from CFRI. Additionally, CFRI awarded one of CHORI's CF scientists with their annual recognition award.
Great non-profit, puts money towards cf education and research.
Their mission statement is a good one, but not all of their employees abide by it. Their director couldn't spend 10 minutes to fix a mistake to help someone in the CF community.
I have been working with and served by CFRI since I was 7. They are a great non-profit that makes sure to put the people they serve before the "business." They make sure to have clients on the board so that the client point of view is always being voiced. At first I was served by them mainly because of the wonderful camp they held every summer for kids with Cystic Fibrosis and adults with CF to mentor the children. As I grew up the camp changed to a Retreat where teens and adults could share their experiences and learn from each other. It is one week where we are surrounded by others just like us. It is such a great experience. Also as I grew up I was asked to speak once at the conference that is geared more towards professionals and parents to a degree in the field of care of children and adults with CF. Also those that are currently researching items that could help the CF community. Often it is the researchers themselves that are supported by CFRI's grants. I have used the other CF non-profits and they all do some good for the CF community but in my opinion CFRI does the most for the CF community with what they have.
I have experience with both CFRI and CFF and I would recommend CFRI any day of the week. They truly care about the CFer and our well being. They do whatever they can at anytime for anyone effected by CF. I have been associated with CFRI in some fashion now for over 25 years. They sponsored the CF Camps I went to as a kid, and then the Adult Retreats as I got older. They also sponsored the CF Conferences for not only those with CF but also our families and doctors. I have had the pleasure of speaking at the Conferences and they are highly informative and also an eye opener to many of the professionals there. The Retreats are great places of support for those with CF and our loved ones. Because of the Retreat my wife has had lots of support of others that have dealt with having someone with CF they love. She knows so many more people she can go to for advice because of CFRI. If it wasn't for CFRI most CFers would never get to meet others with CF face to face any more. CFRI not only makes sure that they support research but they actually support those of us dealing CF day in and day out.
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.
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
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"!
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.
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.
Having a son with cystic fibrosis, I always look to CFRI for the latest in research. They come through time after time.
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.