This is one of the best organizations in our CF community,I have been associated with them for over 25 years. .I was a co-founder with Lois Adams for the first ever Speciality CYSTIC FIBROSIS PHARMACY in Orlando Florida. We did it as I had a grandchild born with Cf and no one could really help with the various meds/ supplies needed for the CF families.
Lois was very well trained in putting this together , having been the Director of the local Regional hospital where all illness were brought.
I was the President of the Central Fl. CF Support Group and was very active in other venues about CF. We made a great team...
The CFRI was the biggest and the best and the ONLY one at the time that dealt with the families AND adults with cf. The CFF only did fund raising for research , along with NIH..at that time.
I am now retired , but still active in the Cystic Fibrosis community,as well as LUNG TRANSPLANTS.. My grand daughter has had a double lung transplant .She is now 30 years old .She is also very active in fund raising for the cause as well,.
The CF Pharmacy is not a non-profit, technectly, BUT ,there is much done for families that could put us on that list over the past 30 years..
The CFRI is the most active and and productive all over for the Cystic Fibrosis Communities all over the world..
I would rate then NUMBER ONE...........in the world..
I look forward to seeing them all in the future.......
CFRI is an amazing non-profit that continues to grow in critical ways for the cystic fibrosis community. At a time where research funding is scarce, CFRI works hard to fund new, cutting-edge science in search of a cure, and to support a better quality of life for those with CF. Their programs and materials make information accessible and link the experts to patients and families. With Sue Landgraf at the helm, an amazing staff and an engaged, active Board of Directors, this organization responds to the community with commitment, energy and compassion. As an attendee at the recent National CF Family Education Conference in California, I could see first hand that CFRI is an extraordinary group of people dedicated to helping all of us who are touched by CF.
I was honored to be invited to give a keynote address to the Cystic Fibrosis Research Inc's (CFRI) "27th National Cystic Fibrosis Family Education Conference" on August 1, 2014. I learned much more about this outstanidng organization, which promotes basic science research, public education, and support for patients and families with cystic fibrosis (CF). CF is a complex genetic disorder, and patients must address a number of treatment needs each day, often totaling 2-3 hours per day. CFRI is a greass roots organization that comes along side patients and their families to help. IN addition, they support important basic science research that will help find a cure for CF, as well as improving the care of CF patients until the cure is found. I higly endorse this outstanding organization, which is worthy of your support.
I work with the health care professionals that care for people with cystic fibrosis, and occasionally the families with loved one with CF. In my experience, CFRI has provided the CF community with valuable resources in the way of fundraising, educational conferences, and support. I look forward to continue working with CFRI in the future.
This is a fine organization which we have supported for over 20 years. Although CFRI is in California and the Cystic Fibrosis Pharmacy, Inc. is in Florida, we have felt a very close kinship to the organization, the principles on which they stand, and their kindness and caring for others. Their yearly conferences cannot be beat for clinical information and comraderie. I am deeply impressed with the caliber of the research that they support and their dissemination to the professionals at their meetings. One of the most touching items of their agenda is the yearly Memorial Service which is a must for us to attend as we have known many of the patients over the years. We plan to continue to support their efforts for many years to come.
I have had 40 years of experience with non-profits that support biomedical research, in the capacity of advisor, grantee, and reviewer. I've been involved in these capacities with CFRI for more than 10 years and I have to say that t hey are one of the most efficiently run groups I've worked with. They support patients, families and research scientists and are incredibly dedicated and effective at what they do. I
As a physician caring for children with CF I have nothing but admiration for this organization. The inclusiveness and truly patient and family centered approach that marks the conduct of their annual meetings is a model for all such organizations. Their commitment to fostering high level and innovative research is no less praiseworthy. Though I am certainly a fan of what the CFF has achieved, the CFRI fills a niche that other organizations do not in the direct access those actually affected by the disease have in every aspect of the CFRI's operations and events. Bravo.
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.
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
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.
Compassionate group devoted to advancing care and treatment of patients with CF.
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.
A great resource. Especially for those outside of the USA.
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
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
CFRI not only supports CF research but drives it into new and unexplored territory. Over the past years, CFRI has generated a vibrant network of CF research in the Bay Area and beyond and has attracted the best scientists into the field. I think CFRI does a superb job in promoting CF research while supporting the CF community at the same time. Hats off to CFRI!
Review from Guidestar
My professional career is coordinator of an adult cystic fibrosis center. My personal life has included two brothers with cf. One died at age 3, over 50 yrs ago, the second, at age 40, just 5 years ago. I have lived in the CF world, work in it, and have seen the results of research, education and support.
A couple of years ago, I was fortunate and honored, to be able to attend a CFRI Educaiton Weekend, and a patient Retreat just following. I was so impressed w/ the organization, the people involved, their dedication, hard work, determination, and the overall organization! This is an impressive group of individuals, who work hard, are compassionate, warm and supportive. I admit, I stole a few of their wonderful ideas and guidelines to bring back to my center on the east coast. While living w/ CF is difficult, CFRI works to make it easier, is supportive, and informational. I have frequently called to ask a question or advice about something, and I ALWAYS get a quick and warm, and of course, informative response. The work and dedication this team organization has for the CF community is phenomenal.
Review from Guidestar
I am very impressed & appreciative of the CFRI folks and all they do. I have a granddaugther who has CF .We have participated in their educational programs for 20 years. My granddaughter has benefited from the many programs resulting from their research grants .CFRI 's Educational programs & speakers have helped me do a better job in caring for our many patients with CF , like my Erin, in ourSpecialty CF Pharmacy. They have helped us in our care & know which medications are best, which pieces of equipment that are best for our patients. The expert's they bring to us with help gained from all their research. This could not be done without the grants from CFRI ., . This makes it a win-win situation for all in our CF family's community
Review from Guidestar
CFRI is a small but impactful organization that provides exceptional educational opportunities and support for both cystic fibrosis patients and their families. It also does a wonderful job in promoting and funding cutting edge cystic fibrosis research and disseminating this information at their annual meeting. They also prove a unique opportunity at their annual meeting for cystic fibrosis researchers and patients (and their families) to interact and discuss aspects of each other's respective experiences with the disease.
Review from Guidestar