I'm a physician - an academic pediatric pulmonologist, professor, and former CF center director at Stanford University, who has been involved with CFRI for many years. CFRI has a unique place in the CF community, serving as a support system as well as research funder. CFRI provides this support in many ways, including subsidizing counseling services, providing venues and technologies for peer group events, and offering educational strategies ranging from a Web-streamed annual conference to archived lectures, newsletters and teaching aides. CFRI provides a strong advocacy forum at the regional, state and national levels. And CFRI has supported focused, high-impact research at basic and clinical science levels for decades. I joined the CFRI Board of Directors several years ago and continue to marvel at the staff's energy, ingenuity and competence in serving the CF community. It's a wonderful organization worthy of your support!
I have been a member of CFRI since its inception over 35 years ago. It has grown into the most incredible organization, funding state of the art CF research, funding exceptional programs for people with CF and their families, doing ongoing public advocacy outreach programs and has become an extended community/family for many who have CF or loved ones living with CF. I have CF and have been volunteering for CFRI for all of these years, working along side the incredibly hard working and devoted team that runs this organization!
I have been involved with CFRI for over 30 years. They raise money to fund innovative and ground-breaking research, as well as provide support to people like me, who have CF and have ever-changing needs as our disease progresses. Their educational programs online and their in-person annual conference are always amazing and informative. In the past few years, CFRI has really stepped up its advocacy as well, which in this world where people with chronic and progressive illness are often overlooked, is huge. Finally, CFRI is my family. The staff and Board members are incredibly dedicated to make this organization the best that it can be.
I have been involved with CFRI for nearly 30 years as my daughter was diagnosed with cystic fibrosis in 1989. She now has two sons of her own and CFRI has been a lifeline of information and support for our family and others living with this challenging disease. It funds first rate researchers pursuing scientific advances in order to accelerate progress as well as offers vital programs addressing the ever-evolving needs of people living with CF. And most important, CFRI is a community that keeps our family informed and optimistic.
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!
Formed 44 years ago by parents of and people with CF, CFRI has been a steady source of support for the CF Community. From facilitating access to professional counseling, to creating group support programs, educational conferences, podcasts covering a wide range of CF related issues, to funding basic scientific research that has provided the knowledge needed by the medical community and pharmaceutical industry to improve the treatment protocols and develop the medicines that have stretched the median CF age from the late teens when I became involved in 1982 to mid-forties now. It has taken, and still is taking, "A Village" to make this progress and CFRI has been a significant member of that Village.
A small, but focused, committed staff which, as they say, "Has skin in the game," either as a parent or relative of a CF person or close friend of such person. They have a highly vested interest in getting the most out of every hour volunteered and every dollar donated to the well being and steady enhancement of the CF Community. And CFRI has been VERY successful in achieving their goals!
We have been involved with CFRI ever since our 5-year-old daughter was diagnosed. It is an amazing charity with an incredible staff. Proceeds are used very efficiently and maximize benefits to research and the needs of those afflicted with this horrible disease. They are very involved with funding amazing research and also advocating for the CF community. I can't speak highly enough of this organization!
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.
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.
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!
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.
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.
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.
I cannot say enough good things about Cystic Fibrosis Research Institute. I have been donating money to CFRI for many, many years, and have had the pleasure of meeting its executive director on numerous occasions. Ms. Landgraf has an adult daughter with CFRI, which gives an extra urgency and commitment to her, and CFRI’s, efforts.
CFRI funds research as well as awareness. I am primarily interested in its research activities. To give an idea about the importance of CFRI’s work, it is currently funding research in Identifying Metagenomic Signals Characteristic of Cystic Fibrosis Exacerbation Onset, Analysis of a functional network of ubiquitin-proteasome dependent degradation of CFTRΔF508, Development and Characterization of Novel 3D Airway Cell Models for CF Research, and Inhibition of Type 4 phosphodiesterases as a therapeutic approach for CF.
CFRI also does an excellent job with its education programs. For example, its October presentation of its CF Discovery Series is “Are They Gone? A Look at the History and Future of Pseudomonas Eradication in Cystic Fibrosis: Where We Have Been and Where We Are Going.” CFRI also has an annual conference as well as its newsletter, plus many other programs.
Donations to CFRI are well-spent. Approximately 41% of its budget is for research, 45.80% for its education programs, and only 13.2% is for administrative costs.
CFRI is a very important part of the battle against cystic fibrosis, and there are not enough stars available to rate it.
I am just amazed by the excellent support this organization gives to those who have CF, their families, and the researchers working to find a cure. Much progress has been made in treating this horrible disease, and this is in no small part due to CFRI's research funding. CFRI also provides frequent, high-quality educational updates to the community that keep everyone informed. All around, this is a top-notch operation! I'm incredibly proud to be supporting it.
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.
I have been a CFRI member for 30+ years and have witnessed the care and support it provides to the CF Community.
Their publication, "CFRI Community," published tri-annually features articles about the latest developments in CD medication, treatment protocols, life-stories about living with CF, updates on sponsored research.
I've attended many of CFRI's annual education conferences featuring experts in all facets of CF, patient panel discussions about coping with CF, focus group sessions addressing specific CF areas in depth, and social events that affirm the power and care of the CF Community.
CFRI's sponsored research has long expanded the basic knowledge about the biology of CF providing the insights that allow the large pharmaceutical companies and research institutions to develop the drugs and protocols that have extended the median CF age from mid-teens when I became involved in 1982 to mid-forties now.
A few years ago, CFRI played a major role in getting the State of California to included CF in the mandated "New Born Screening" program. Early diagnosis is fundamental to living a successful life with CF.
And, because of the large number of CFRI volunteers, all of CFRI's programs are handled by a staff of FIVE people. Efficiency and effectiveness is their benchmark. They never miss!
I have been on the Finance and Audit committees and I currently serve on the board of directors. CFRI is providing education in the community, emotional support for CF families, and funding for research to find a cure for Cystic Fibrosis. The lives of CF patients and their families are constructively impacted by the CFRI mission. Life expectancy is being constantly extended and quality of life is improved but, there is much more to be done. CFRI intelligently applies funds.
CFRI is focused on leading edge research aimed at a cure for Cystic Fibrosis. CFRI also provides a network of warm and caring individuals who empathize and nurture CF patients and their families. Conscientious application of funds is the hallmark of this outstanding organization.
Amazing information in a constant clear description that I'm always sharing with groups and support it continuing. There are 70,000 X Family = Millions and CFRI Is a constant in helping. 65
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!
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.
CFRI is a key resource for the CF community including families dealing with CF, patients with CF, CF researchers and physicians. Through educational conferences , live streaming special topic presentations, DVDs, newsletters, community outreach and fundraising, CFRI provides an invaluable service the the CF community. CFRI staff, Board members and volunteers are committed to spreading awareness of CF, answering questions related to CF research and development , promoting fundraising and educating the public about CF. Additionally, CFRI is making huge efforts to reach out to the Hispanic community dealing with CF providing educational materials, bi lingual newsletters and DVDs. CFRIs fundraising successes have had huge impact in providing monies for CF researchers who are making great strides in CF research.