Cystic Fibrosis Research Institute (CFRI)

I’m a CF patient who has been involved in CFRI for 32 years. They have always been incredibly transparent and responsible in using their funds wisely. The organization has an amazing, dedicated, hard-working staff who are all passionate about helping the CF community. They offer a plethora of services for CF families as well as research funding and advocacy. A smaller organization than CFF but this intimacy creates openness and flexibility to help CFRI expand in what they offer. Everyone I met involved in CFRI is truly remarkable and kind people! Best community ever!

I have been a volunteer with CFRI for over twenty years and proudly serve as a board member. I was introduced to CFRI by my best friend who had CF and regularly attended their programs. The sense of community was a priceless gift to her and after attending a retreat and educational conference with her, I began to volunteer with this amazing organization. Along with fostering a community, CFRI is committed to being a resource to the CF community through its focus on advocacy, support, education, and research. This is an organization that truly cares for the community it serves.

I have been volunteering at CFRI for almost a year. When I started volunteering here, I did not know much about cystic fibrosis and the effort that was put into the research and awareness of cystic fibrosis. After a few months, I realized the amount of empathy and thoughtfulness all the members of CFRI have. The research that is done in this field to cure this disease is tremendous and marvelous. CFRI is an amazing institution and I am proud for volunteering here!

I discovered CFRI about a couple decades ago after my younger brother was diagnosed with Cystic Fibrosis, a genetic disease. At that time, me and my family had never heard CF and soon learned that this diagnosis would change and greatly impact all of our lives. We had reached out to many organizations to learn more, connect with others and find resources and support to help us navigate our uncertain future and all fell short with exception to CFRI.
The staff was beyond friendly and knowledgeable, they instantly felt like family and treated us as such. They offer a wide variety of programs, classes, educational offering, and most importantly connecting community of a disease that is often very isolating. The love and support we have received from CFRI has greatly changed, enriched and positively impacted me and my family's life.
Being so moved by the work they preform; I was inspired to volunteer and dedicate my time to helping them fulfil their mission and support other families as they did mine. I have now been an enthusiastic volunteer for well over a decade, helping in many various capacities. CFRI also encouraged me to become an advocate at the local and state levels to spread awareness of various topics affecting the people of this community and sharing my stories and experience.
This wonderful and amazing organization has brought such purpose and joy into my life, it helped me find peace, support and the knowledge and tools needed to live with this disease, and I don't know what I would have done without them.

I love CFRI. They became my 'family' when I moved to CA decades ago from the Midwest, where I knew nobody else with CF. I have volunteered for the organization through the years and now sit proudly on the Board of Directors. My fellow Board members, Siri (Executive Director), and all of the staff members are some of the most dedicated and selfless people I know. They are passionate about research, advocacy, education, and support of all types. They serve with the highest integrity and any dollars given to this organization will be spent with great care and respect for all those with cystic fibrosis and their loved ones.

Ever since our son was born with cystic fibrosis, CFRI has been a tremendous help. We attended the many educational meetings, events, and presentations produced by CFRI, and also learned from the newsletters that CFRI publishes. We also take advantage of the monthly support group that CFRI sponsors at the hospital for caregivers of people with cystic fibrosis.

CFRI amazes me in how they continue growing ways to support the Cystic Fibrosis community. CFRI has been one of my main sources of support since the pandemic shutdown through their Zoom-based offerings. I want to also highlight their support group in Spanish which is unique and needed as well as their important role in advocating for people with Cystic Fibrosis. I can never thank CFRI enough for all they do for me and for our community.

I love volunteering for this non-profit. They have such an important mission for folks with cystic fibrosis - the money they raise helps fund research and build community. I also love how involved and engaged the other volunteers are, and together we will do great things. Thanks so much CFRI!!!

Wow!!! I don't' know where to start. CFRI has been my life saver. Being a mother of a daughter with CF I wouldn't know where to turn for help if it wasn’t for CFRI. This organization not only works on supporting research and the wellbeing of the patient but also supports the entire family putting attention on the emotional care of caregivers that most of the times are forgotten by majority of institutions. One of the CFRI blessings I get to enjoy is the CF Mother’s retreat that once a year pamper us from the inside out. Yoga, mindfulness, art, healing drums and sharing our experiences with other mothers is our safe heaven where we recharge our energy to continue the never-ending and sometimes exhausting journey of being the caregivers of our kids with Cystic Fibrosis. I Give CFRI 5 start but I wan to give them 50!!!! Thank you CFRI!!!

I have a son with cystic fibrosis and I am grateful for the resources and support that CFRI provides the Cystic Fibrosis Community. For many years I've attended CFRI's annual education conference and the annual Embrace Mother's Retreat. The CFRI Team of caring professionals set the tone and lead the pace for continued progress toward improved awareness and quality of life for all people living with CF and their families. I can't imagine navigating such an impactful chronic disease without CFRI by my side. Thank you, CFRI, you make a huge positive difference in my and my family's life!

I first learned about CFRI 41 years ago when my daughter was born with CF. Because the organization is made up mostly by parents of children with CF (and now people with CF), as well as their close friends, there was never a question about what their overriding goal was. Over all those years the leadership has always been selfless and remarkably committed. I have had so many questions answered, and so many fears allayed by talking with members of CFRI that I'll never be able to adequately express my appreciation.

Cystic Fibrosis Research Institute is a highly energized collection of compassionate individuals who work with determination to find a cure. for CF and to provide personalized services to individuals with CF. Through relationships with pharmaceuticals, health advocate agencies, and government initiatives, CFRI exerts a positive global influence. CFRI is a wonderful example of a focused community effort that achieves extraordinary results.

There are nonprofits that spread their talents too thin; others focus with laser sharpness on a single issue. Not CFRI. CFRI walks with perfect balance. Their holistic approach to the patient and family encompasses advocacy and runs deep with a fervent love and caring that heals. CFRI recognizes the strength of connection and eschews division. Their actions are evidence driven and provide results to those who need them most.

CFRI has been an incredible resource and advocate for families supporting those with cystic fibrosis. The work they do gives me hope that one day there will be a cure for CF. And until that day comes, CFRI will be the best advocate we could ask for.

This organization is at the forefront of issues impacting the CF community. I was proud to support these efforts over the years. From mental health , to cancer screenings they are raising awareness and educating our community about these important issues to help save lives .

My family has had the opportunity to volunteer for the Cystic Fibrosis Research Inc. We can see through the work that we have done the great support they provide via the fund raising efforts and community outreach. We have enjoyed supporting the organization in any way we can and hope to continue to do so for years to come.

I work regularly with CFRI on behalf of my caseload of adult patients with cystic fibrosis at Stanford Health Care. CFRI is responsive, compassionate, and attentive to the changing needs of this patient community. CFRI's Partner's in Living Program offers a multitude of resources to the CF community, mostly free of charge. The resources include support groups, classes, and myriad educational opportunities to optimize the experience of living with such a complex disease. I don't know what I would do without CFRI! They are absolutely essential to the advancement and support of individuals and families living with CF.

What started as a local support organization determined to find a cure for CF by supporting research, CFRI has richly expanded their patient and family services while continuing to stay focused on supporting CF researchers around the world. I am glad CFRI is there when my family is in need of emotional support or for learning the latest in treatments and research.

CFRI is incredible. In addition to their tireless work on funding research for a cure, their programs to support people and families living with CF are robust and nonstop. We at our CF center are so lucky to have them as a partner!

CFRI is more than an organization, it is a family. This is how I feel since I encounter the love and support of every member. For the people who work and volunteer here, this is not a job, this is their life purpose and their mission. What amazes me the most is how this organization does not forget any members of the CF families. Mothers, Fathers, brothers, sisters, and even friends are considered here. The organization offers the most wonderful resources to educate and support the families of the CF members in addition to launching brilliant research towards a cure. I am only giving them 5 stars because I could not find 10+ which will be a more accurate description!!!

About Cystic Fibrosis Research, Inc. in 2020

Cystic Fibrosis Research, Inc. (CFRI) is a 501(c)(3) charitable organization founded in 1975, that funds cystic fibrosis (CF) research and offers education, advocacy and psycho-social support to those with CF, as well as their families and caregivers.
CFRI’s mission is to fund CF research, provide educational and personal support, and spread awareness of CF, a life-threatening genetic disease. CFRI seeks to inform, engage and empower the CF community to reach the highest possible quality of life, as proceeds work towards a cure.
CFRI was incorporated in 1975 by a small group of CF family members whose children were not expected to survive their teen years. These founding members were committed to keeping overhead low so as to raise funds for research. Originally, the founding members were all volunteers, until the first full time executive director was hired in 1990.
Initially focused solely on research, CFRI responded to the aging CF community’s needs by expanding its programs to include educational and support. CFRI grew into a million-dollar agency in 2012 and continues in its efforts to fund research, education, psycho social programs to those with CF, their families and caregivers. When our son was born in 1977 and diagnosed with CF at 5 weeks old, the doctor told us that he would live to be 11 years old. With his diagnosis, I changed careers and joined CFRI as a volunteer, to raise money and to learn how to care for him. He is now a thriving 43 year old man, taking Trikafta, with a beautiful family, a father, a home owner and full time worker.
CFRI’s major goals are:
Research: To ensure research will continue toward a cure, we fund collegiate CF researchers who then collaborate with pharmaceutical companies such as Vertex to develop CF medicine that lead to drugs like Orkambi, Symdeko and Trikafta that have vastly improved the lives of those with cystic fibrosis.
Advocacy: Engage the national CF community, industry and funders in advocacy and awareness efforts that increase quality of life for cystic fibrosis patients.
Education: Create innovative and responsive education and support programs for the CF community including an annual Cystic Fibrosis Family Education Conference where researchers and doctors from around the world present new information about cystic fibrosis discoveries and treatments. In 1988, I organized the first Cystic Fibrosis Education Conference and then organized the following 12 annual educational conferences so we could learn how to care for our CF families. In 2020, CFRI had its 33rd National Cystic Fibrosis Education Conference.
Sustainability: Develop new partnerships and strengthen existing collaborations with the community, industry and funders.
CFRI’s EIN 51-0169988

CFRI has continually gone above and beyond to support Cystic Fibrosis patients, families and friends. My daughter is 18 years old and through the years I have learned invaluable information through CFRI's programs. It gives me a sense of community and empowerment that I would not obtain from another organization.

This year my daughter was able to attend retreat, it was an amazing experience for her to meet and discuss Cystic Fibrosis with others that know first hand how challenging CF can be! As my daughter blossoms into adulthood and independence I am thankful for her involvement with CFRI. I am confident she will continue to be connected to the CF community through CFRI and sincerely hope she expands her knowledge of CF through CFRI's programs.

CFRI has continually gone above and beyond to support Cystic Fibrosis patients, families and friends. My daughter is 18 years old and through the years I have learned invaluable information through CFRI's programs. It gives me a sense of community and empowerment that I would not obtain from another organization.

This year my daughter was able to attend retreat, it was an amazing experience for her to meet and discuss Cystic Fibrosis with others that know first hand how challenging CF can be! As my daughter blossoms into adulthood and independence I am thankful for her involvement with CFRI. I am confident she will continue to be connected to the CF community through CFRI and sincerely hope she expands her knowledge of CF through CFRI's programs.

My husband and I have been involved with CFRI (Cystic Fibrosis Research, Inc.) for 23 years as supporters and volunteers on a variety of committees including my serving on the board of directors for several years. Why? Our grandson, now 26 years old, was almost 3 when he was diagnosed with cystic fibrosis, a genetic disease that has no cure to date. Throughout the years, CFRI has provided us with support and vital information through their education and research programs so that our grandson and our entire family has access to CF resources that help guide us, comfort us and give us hope in Cameron’s battle with this life-threatening disease. He is doing quite well at this point having graduated from college majoring in mechanical engineering and having secured a good job in his field. We whole-heartedly support all the programs the organization has offered and believe they are unique in their fiscal responsibilities by limiting the number of staff they employ and engaging so many volunteers to help us reach our goal. The organization is such a caring group for our community.

CFRI provides information and programs for the CF community. CFRI offers podcasts on topics such as financial planning, current CF research and sexual and reproductive health. CFRI offers yearly retreats, support groups, yoga classes, and activities like crafts and game night to those with CF. CFRI provides members of the CF community funding for physical training programs and mental health sessions. CFRI funds research to improve CF treatments and extend life expectancy for those with CF. CFRI advocates for those with CF by meeting with policy makers to bring about positive changes to the CF community. CFRI serves the CF Community by making life better for those living with CF.

CFRI is family. They have been on my side for 9 years now. Every person at CFRI genuinely cares about every single person that reaches out to them. They never stop working to strive to help others with the many programs, retreats, and conferences they offer. I would do anything for this organization. CFRI should be recognized for far exceeding all expectations when it comes to a nonprofit. They are truly wonderful people.

Wonderful non profit with many of the staff touched personally by CF. CFRI is full of compassionate hard working professionals that raise money with all their heart and soul.

I have been involved with CFRI over the past two years. They are an incredible organization helping CF patients and caregivers with education, fundraising, research and advocacy. It is the best advocacy group I have been involved with in the healthcare industry during my 25 year experience.

CFRI is an incredible organization that advocates for the entire cystic fibrosis community, including individuals with CF, caregivers, and family members. My experience with them over the past 4 years has been incredibly heartening to see all the opportunities for support, education, and advocacy. Please look into this organization to learn more about CF and get involved in any way that you can! Big thank you to Siri and Tony for being amazing colleagues!!

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 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.

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.

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.

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!

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.......
GrandmomBev
Beverley Donelson

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.

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.

Great non-profit, puts money towards cf education and research.
Wonderful!

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

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.

As an allied health care provider for adults and children with CF for the past 30 years, I have nothing but great things to say about CFRI. The education and support they provide to families is second to none. CFRI holds themselves to a very high standard, in conduct as well as transparency. Their commitment to supporting basic research and evaluating each proposal is exemplary. CFRI fills a niche that other organizations do not in providing safe environments/access for the educational and psycho-social benefit of those affected with CF.

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!

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.

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.

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

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.

One of my favorite organizations! They do so much for the CF community, including providing a sense of community. There aren't enough words to say what they mean to me.

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 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.

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"!

At CFRI, my son and I experienced professional and efficient attention to our interest in finding a researcher doing pioneering work on CF. We have a small foundation, and there were many competing organizations/individuals who could have used our assistance. Filtering our needs through CFRI proved to be a wise and satisfying decision. We appreciate the ongoing relationship.

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.

Love CFRI's cause and everyone involved!
They are here for the CFRI community!
Kudos for our Five star CFRI; you are the best!

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.

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

CFRI is a fantastic organization led by Carroll Jenkins, David Soohoo and a wonderful board of directors. I have been a contributor to CFRI for their annual conference and retreat for those touched by CF. I travel from Chicago to San Francisco every summe to attend the educational conference.

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.

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.

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.

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.

I found out about CFRI through a grandmother who was crusading for her CF striken grandchild. I attended 2 conferences in 2011 and 12.

This is one of the hidden gems, working relentlessly for the cause of CF. Their 2 day annual conference and camp are an amazing forum to meet, interact with the best minds in the business. I have learnt a ton from this organisation which I am sharing with other families as we all cope with the devastating effect of CF and hope for a cure one day.

Sanjeev Bode Dallas TX

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.

Once upon a time a little princess was born to her loving parents. She was breathtakingly beautiful with ruby red lips curled into a smile, creamy skin, wavy dark brown hair, long legs, and tiny hands with the most perfect little fingers. Life was perfect! The princess was taken home and for the first month, life in the kingdom was a bit unsettled. The little princess was hungry all the time, wasn't gaining weight, and never slept much. Her worried parents sought the advice of the royal physician. "All is well with our princess," he declared. "She just needs more to eat. You must give her some formula." At that time, the royal physician did not even entertain the thought that the princess was truly ill, and that her symptoms were consistent with Cystic Fibrosis. She was simply too healthy! Her parents added formula to her breast milk diet and soon the little princess wasn't crying much, but she was still eating all the time and gaining weight slowly. Over the next 20 months, life was delightful for the princess and her parents. She grew, slowly, into a chubby-cheeked toddler who doted on Pumpkin Bear, her beloved brown teddy bear, and she brought joy, laughter and love to all who knew her. The princess, at age 22 months, seemed to be thriving until one day when she fell ill with gastrointestinal problems. A dark cloud covered the kingdom while her worried parents anxiously awaited the results of a 'sweat test' -- a test that the royal physician ordered to determine if the lovely little princess had Cystic Fibrosis. When the test came back positive, the kingdom was drowning in tears shed for their precious princess because her parents had been told she would be lucky to live to be 5 years old. "That cannot be" her parents declared. They devoted themselves to giving their princess the best care possible. Her fifth birthday came and went and the princess was healthy in spite of the dire prediction by the specialist. The kingdom celebrated joyously and they gathered in Monterey to watch their darling princess ride one of the most exquisite horses in the CFRI Parade of Champions. The beautiful and kind princess has grown and married, and at almost 29 years old, she has celebrated many happy and healthy years punctuated by some very bleak years where she had a liver transplant at age 12 due to Cystic Fibrosis killing her liver, followed by several years of life-threatening lung infections brought on by taking the immuno-suppresion drugs needed to prevent her body from rejecting her liver. These necessary drugs enabled deadly opportunistic bacteria and fungus to grow in her CF lungs. Life was grim for many years. With the advice and support her parents started receiving from CFRI when the princess was 4 years old, her parents became knowledgeable about their daughter's disease and skilled at navigating the medical world so their princess could live a long and healthy life. For nearly 25 years, the princess and her parents have been involved in a supportive and caring lifeline relationship with CFRI. Throughout the years, the staff and other families with children afflicted with CF who also consider themselves part of the caring community created by CFRI, have always been available to discuss the latest treatment options, to provide general CF education materials/conferences/discussions, and to provide that much-needed shoulder to lean on in times of crisis. CFRI has created a true community of compassionate, caring and knowledgeable individuals, medical professionals, volunteers, staff, and board who are fiercely dedicated to providing education, research, advocacy, and support to individuals with CF and their families. CFRI reaches out to those in need - always providing pertinent health education materials, referrals, and answers. They provide seed money for cutting edge research aimed at developing new drug therapies and ultimately a cure for this life-shortening genetic disease; and they do all of this with a small staff and without a large expense budget. Their financial commitment to CF research and education is remarkable. With the guidance of their dedicated executive director, Carroll Jenkins, CFRI is solid financially and growing thoughtfully and strategically so that they can meet the needs of the CF community. CFRI is truly a GREAT Nonprofit!

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.

I have participated in CFRI as a client served, a volunteer, a Board member, and an advisor (not all at once) for the last 25 years. I have never encountered a group more passionate about their cause or more professional in going about achieving their goal of helping patients, families, and caregivers dealing with cystic fibrosis. The provide quality educational events and are always available to answer questions and help in any way they possibly can. They do a remarkable job fundraising, and ensure that the money raised is directed toward quality research, always directed at improving the lives of those with this devastating disease.

In 1961, I was the parent of eighteen month old twins and told they had a very serious and generally fatal disease. Naturally all I wanted was a cure for Cystic Fibrosis for them. Fortunately they continued to survive. In 1974 the name alone, Cystic Fibrosis Research, Inc. called me to join the newly formed volunteer group raising funds for CF researchers. That was how I could help!

Throughout thirty-eight years CFRI has continued its mission raising funds for peer reviewed CF research and education of the public, parents, and patients (who now may reach the median age of thirty-seven plus). Via newsletters, meetings, annual three day conferences with CF medical expert
speakers, .a summer retreat, devoted office staff and volunteers, CFRI keeps us up to date on all things pertaining to relevant issues and CF research.

And, YES, I'm proud to have been a member of Cystic Fibrosis Research Inc. all these years.

May the cure be found soon..

Sincerely,
Norma L. Stuckert

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.

In 1982 our grand-niece was born and a few months later she was diagnosed with CF. At the time, life expectancy for those diagnosed with CF was in their mid-20s. Our grand-niece is now 30, married, and with a beautiful daughter of her own. The research CFRI does is priceless to the loved ones of people coping with CF. I hear lots of good things about CFRI from family members who have participated directly with major fundraising events and have served on the board.

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.

CFRI has been a part of my life for many years now. My son, who is now, 19 years old was diagnosed with Cystic Fibrosis shortly after birth. Through CFRI, I have been able to educate myself and my son through newsletter and online video topics. They keep me abreast of the latest research and share heartwarming stories. The CF community benefits from CFRI even though we are a thousand miles away. Thank you CFRI.

CFRI has been an integral part of my life and that of my family since I was diagnosed with Cystic Fibrosis at 22 months old. Their dedication to collecting and proliferating knowledge on CF as well as funding the research that is vital to an eventual cure is essential to helping those with CF function in their daily lives and live with hope that one day CF will be a distant memory. Their executive director, Carroll Jenkins, is possibly the kindest and most compassionate woman I've ever met, going out of her way to make personal connections with individuals with CF and their families and help them in every way possible. I just can't speak highly enough of this organization.

We are so thankful for CFRI. They are on the cutting edge of research for this horrific disease, and yet have the time to make a personal difference in the lives of so many patients!

Cfri has done an outstanding job of keeping me informed of important information from the latest ground breaking research to a wide variety of upcoming events and activities. Cfri have gone out of their way on multiple occasions to answer my questions via a personal phonecall. I have not been only very impressed with what they are able to accomplish with such a limited staff but also very grateful. -Dave Pastush

Too much to say about CFRI. They bring about great fundraisers that raise money, awareness and passion. They help to fund the clinics that give our CF children the care they need to become CF adults. Couldn't do it without the CFRI!

My daughter has CF. We don't live in CA, so I am especially grateful for all the work they do and that they make workshops and talks available online. They are very informative and help us greatly, both in our daily lives and keeping us in the loop with progresses made. Thank you, CFRI!

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

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.

When I attended my first CFRI conference, I felt like I had come home. I was welcomed by a warm, caring, compassionate and friendly staff. I immediately knew that I wanted to become involved in this organization, which isn't easy to do while living in the Midwest. But, no matter how little I was able to do for them, the staff and volunteers were always appreciative; they always make one feel valuable. CFRI is the only venue where I'm able to hear speakers talk about the latest research as well as other topics of interest to those with CF. I've often told my husband that if we could afford a home in California, I would move there just so that I could participate and volunteer more with this most impressive association.

In 1982, our granddaughter, Lindsey, was born and four or five months later we found out she had cystic fibrosis. She was not thriving and her weight was down considerably. We were devastated, but started learning about the disease. I looked up Cystic Fibrosis in the phone book and called the number. It was Cystic Fibrosis Research, Inc. in Palo Alto, CA (now located in Mountain View, the city next to Palo Alto). They had doctors to help people know how to take care of children with CF, and we felt after attending some of their meetings that this was a worthwhile organization who had research scientists working on the problem to find a cure. Over the last 30 years, much research has resulted in getting much closer to a cure; but not only that, they have scientists (companies) who have developed enzymes, medications, etc. to help the patient stay well and lead a much more normal life. I have been ever grateful for this organization and when we lived in San Jose, CA I was invited to serve on the Board of Directors, which I did for a year or so and our family helped raise much needed funds by doing long distant bike rides and getting sponsors. My husband did three 500-mile bike rides down the coast of California from San Francisco to Huntington Beach. Then when my husband was 59 years old he did a double century (200 mile) bike ride in one day from San Jose to San Luis Obispo, CA. We also sponsored a skate-a-thon at our roller skating rink in San Jose. I know the money that was raised was spent wisely, and I am very thankful that my granddaughter is now 30 years old, married, and has a two-year old daughter of her own. Thanks, CFRI for helping to give her a nearly normal life. My husband, Ed, passed away on August 12th of this year, but I know I speak for both of us and our entire family that we appreciate and love those who serve as volunteers and contributors to this great organization. Barbara Jensen, Draper, UT

CFRI has a booklet called "Cystic Fibrosis in the classroom" that was instrumental in helping me communicate the things my daughter needed before entering kindergarten. Ive read similar pamphlets and this one was written so much better. Also the person I spoke to was very informative, providing me with further materials and getting them to me 2 days later!

CFRI is a real Godsend! Great group of dedicated professionals!

CFRO is a great resource for any new or longtime cystic fibrosis patient and family. They provide much needed information and support to the CF community.

I have cystic fibrosis. When I moved to the San Francisco Bay Area 20 years ago, CFRI became my second family. The volunteers and staff are personable, loving , compassionate, knowledgable about CF and incredibly resourceful and supportive. Twenty years later, I can honestly say I would not be alive without CFRI- they have taught me so much with their annual family educational conference (things not even my doctor knew) and have offered an invaluable number of skills ,wisdom and emotional support during their support groups, educational seminars and annual summer retreat for people living with this very challenging disease. CF remembers those we have lost, supports those struggling with the emotional and physical aspects of the disease, and inspires hope by funding critical research to find a cure. No other existing CF non-profit organization has supported me in any way CLOSE to the way CFRI has. Please support CFRI - unlike other national CF organizations, it is not just about fundraising and research for cures that will come decades from now; it is about supporting families in the here and NOW dealing with ALL aspects of living and surviving CF.

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.

CFRI has been one of the most important resources in our lives. As a mother of a child with CF, CFRI has provided more intelligent information on care, medical options, and all around tips on how to live with this horrible disease. I am so grateful for their existence!

CFRI saved my life after my son was diagnosed with CF. As time went on, and I learned all I could from them about new treatments and care for children with CF, it really impacted my son's life. He's a healthy 21 year old getting ready to graduate college. Thank you CFRI!!

If there is anyone out there interested, I have the ability to help this charity raise money for their cause. JulieLyons4@gmail.com

Cfri does monthly meetings which are live streamed so everyone can attend. Their yearly retreat changed the life of my daughter. Ty's nonprofit is amazing!!!

My association with CFRI spans nearly 25 years. Our 28-year-old daughter was diagnosed with CF when she was 22 months old, but it wasn't until she was three-years-old that we returned to the Bay Area and began to volunteer our time fundraising for CFRI. We will never be able to match what we have raised to what they have given to us in research/information/education and a shoulder to lean on. They continue to empower and give hope to the parents of children with CF, the children/adults with CF, the family and friends of those with CF through the sharing of knowledge about the disease, resources for care, and continued funding of medical research and education programs. As a former board member, I know the staff and volunteers are totally invested in providing a better future for those living with Cystic Fibrosis, and it shows in their heartfelt relationships with the CF community.

My son was very sick for 5 or 6 years and the doctors at Children's hospital must have tested him for everything known to mankind. Nothing ever panned out. Then they decided to test my son for Cystic Fibrosis. That turned out to be the problem. We were devastated. We were searching for an answer with a solution, we found Cystic Fibrosis instead. Since my son started going to see the doctors at the Shreveport Cystic Fibrosis center, his health has improved, markedly. Instead of 6 to 7 hospital admissions a year, he has not been admitted in over a year. Because of Cystic Fibrosis Research Inc and my son's Cystic Fibrosis Care Center, we have hope for the future. A future with many years of accomplishments that would not have been possible just 40 years ago.

I am the grandmother of two children who have cystic fibrosis. When our granddaughters were diagnosed with cf, I had no idea what it was or how it would affect their lives. CFRI has has been a wonderful resource for understanding the disease, as well as keeping up to date on the treatments that are developing.

As a new parent, Cystic Fibrosis completely changes every aspect of life when it arrives, uninvited and completely unexpected (we've been fighting this disease for 28 eight years now). Cystic Fibrosis Research Inc (CFRI) has always been there with support, timely information that is extremely valuable in fighting the disease, and resources, resources, resources to help overcome each battle along the way. CFRI has been invaluable in our lives living with CF, and we appreciate the people and the organization beyond words. CFRI also brings the world of CF fighters together, allowing for crucial exchange of information, as well as encouragement and community.

Outstanding educational and advocacy resource! CFRI are experts in all things Cystic Fibrosis.

As a carrier of the CF gene and sister to an adult with CF, this organization keeps me informed on new research, events for CF survivors, and supports efforts to find a cure for this genetic disease. This organization is the primary source of information on Cystic Fibrosis, one of the most frequently diagnosed life-limiting diseases of children. Keep up the great work!

As a parent of a child (now an adult) with Cystic Fibrosis I have come to depend on Cystic Fibrosis Research, Inc for my continued up-to-date information on this disease. While I am not able to attend their events in person I follow their posting online on a regular basis and watch their videos. This organization has become my "partner" in keeping my CF knowledge current so I can be the best possible caregiver to my daughter.

I am writing again to support CFRI. I have been involved with CFRI for 30 years now. It has been my family's support while dealing with CF. It is a great and caring organization that offers connection, education, ways to make a difference and a community for all who get involved. Kudos to all who are the backbone of CFRI. Thank you for all that you do.

I first attended a CFRI event in 1990 and have followed/visited/donated at various times since then.
CFRI went throught a change in directorship several years ago and, unlike leadership transition in the many non-profit organizations I have been affiliated with, they continued to build strongly on their original vision and previous accomplishments.
One of the unique aspects of CFRI is their blend of the professional and the personal. I have dropped by their office with no advance notice or phoned up out of the blue, and I am always given the same patient attention as if I had an appointment. This sensitive orientation to individuals is important (almost unheard of) in health care organizations and doubly so where the stresses of cystic fibrosis are often immense on consumers and their families.
Having read more CFRI newsletters than I can remember, I also appreciate the organizational transparency. Donations, annual expenses,and the fiscal aspect of the organization is always clearly spelled out. They prioritize solidly: research and service first and salaries and overhead second.
I could write more, but I will conclude by simply saying CFRI is a special organization with a great history and a dynamic vision for the future. I am proud to be affiliated with CFRI as a loyal donor.

Cystic Fibrosis Research, Inc., (CFRI) is an excellent organization with an equally impressive staff. CFRI is dedicated to advancing education about CF and funding research to help advance treatments. I have found CFRI to be one of the best non-profit agency of which I have been acquainted.

Much of the thanks for the greatness of this organization stems from two sources: (1) the amazing, courteous, and helpful staff -- spearheaded by Carroll Jenkins and David Soohoo; and (2) dedicated members of the community that rally together under the CFRI banner.

Our family has benefited immeasurably by CFRI. From providing pamphlets regarding CF in the classroom to coordinating the annual CFRI conference, CFRI has provided timely and useful information that have aided my family. In addition to this invaluable information, CFRI has help promote CF research.

As with others, I just wish that I had more (time and money) that I could contribute. For those who can help CFRI, rest assured that your funds are being used to serve those coping with cystic fibrosis, their families, and friends.

I was a founding member of CFRI back in the 1960's and had several children with cystic fibrosis who, with me and my wife, benefited from information and moral support this organization has provided. And of course CFRI has, through its research grants, substantially contributed to the ever-ongoing improvements in the treatment of CF patients and understanding of the disease. Our first two children with CF, born in the sixties, died before they were six; our last was twenty-one. Many now are twice her age. Thanks in part to CFRI, the life expectancy goes up and up.

On April 9, 2011, I will be 80 years old, and I have cystic fibrosis. Of all the organizations to which I donate, in my opinion, the CFRI is the best of them all. They are conscientious, dedicated, efficient, and successful. Their program to help those of us with CF, and to help the public understand the disease is excellent, and is not equaled by any other cystic fibrosis organization. I recommend CFRI to CF support groups on the internet, as CFRI makes a difference in the lives of those of us who have cystic fibrosis. I certainly am thankful they exist!

I have been a volunteer with the Cystic Fibrosis community for 29 years, both at a local hospital and as a participant in CFRI activities. i first learned about CFRI from the CF patients and parents who created the organization in 1975. CFRI's primary focus is to help fund new CF research projects focused on understanding the many bio-physical aspects of CF. Their other focus is to provide education and support for the CF patients and their families.

The annual CF conference brings together top clinicians/researchers from around the globe to describe their insights into the evolving research and best-practices to the CF community.

The conference also fosters a sense of community through their focus sections which allow patients and families to share their stories about how they deal with the myriad aspects of living with CF. From my perspective, the building and maintaining this sense of community is CFRI's most important mission. The research and focus on "best-practices" have obviously improved the clinical care and life expectancy of CF patients. The strong sense of community identity established withing the focus groups has strongly improved the societal well-being of the CF patients and families. No patient or family need believe they are alone in their struggle with the realities of CF. Each patient and family can be encouraged and motivated by the successes and insights provided by their fellow patients and families within the CF community. CFRI is a major player in this effort.

I have CF Adult, diagnosed in 2008. CFRI has been very informative and is up-to-date, always. Many friends prefer this organization for their efficiency and personal assistance over several organizations that assist Cystic Fibrosis patients. They are very prompt when responding to a question, they sponsor several informative workshops throughout the year that are on a patient/parent relevant and at the patient's parent level of understanding. This is extremely beneficial for information and expert care. They work very hard and are very dedicated to this serious illness and can make a difference in life or death. I would contact CFRI as my first choice for information and care.

I have been a lay person volunteer on CFRI's Research Advisory Committee for over 30 years. I have participated in careful selection of worthy medical research projects to fund with our precious donations. Everyone on the committee is dedicated to the best outcomes of the pursuit of medical breakthroughs.
CFRI attracts the best persons and cherishes their time.

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

My son was diagnosed with Cystic Fibrosis at the age of 6 months back in 1983. CFRI was a source of hope and encouragement to me than, and has continued to be a source of encouragement to me through the years. When my son was younger, he went to the camps CFRI held ea ch summer. As he got older, he attended the annual retreats that CFRI funds. CFRI puts on an annual educational weekend for those with CF, parents,siblings, and friends. These have been an invaluable source of education for the CF community. CFRI also funds some great research. This organization has mad a difference in my life, and countless others.

Hi! I'm an italian mother who have a child aged 6 diagnosed by screening when he was born. I discovered CFRI at this time and during the last 6 years I always received CFRI's newsletter to know how CFRI do for patients and their family.
Now I am a member of Lega Italiana Fibrosi Cistica, the "italian sister" of CFRI, and the relationship with CFRI is very important for me to see what we can do and how we can do to solve our common problem.
Having comparison with different reality is always very important.
Thank you CFRI.

When I was born, my parents were told that I would not live to graduate from high school. With help from organizations like CFRI, I am a fully independent, 24-year-old college graduate. I participate in CFRI's "Mother's Day Tea" fundraiser every year to help raise much needed funds and awareness for CF. I have also attended several of the educational and supportive events hosted by CFRI. This organization makes an enormous impact in the lives of families affected by CF.

Anthony would turn 42 this year. He lived with cystic fibrosis, was granted 2+ years, post double lung transplant, and thanks to CFRI, and Anthony's involvement with the people there and at the SUMMER CAMP, sponsored by CFRI his memory lives on. This is no small thing!
His mom and I were invited to attend the candle lighting memorial at the CFRI SUMMER CAMP last year. To sit with a dozen CF campers as they lit candles to honor the memory of hundreds of their friends/former campers moved me to tears. No one that young should have that much experience with personal loss!
CFRI camp helps young adults deal with the reality, not as victims, but by their demonstration of compassion and acceptance to one another that they are survivors, miracles, and extra-ordinary people.
I am changed, honored, and blessed by the people of CFRI.
Thank you CFRI.
Thank you Anthony.

CFRI has played a pivotal role in introducing me back into the CF community. I'm a 33 year old man with CF who had most of my hospital CF friends pass on before I was 20. I was introduced to CFRI by being a panel speaker on adults living with CF at their annual educational conference. This conference along with their adult CF retreat is an extremely valuable asset to people dealing with CF everyday, including patients, families and medical professionals. They also have educational seminars and videos throughout the year help those living with or caring for someone with CF. I'm very thankful to CFRI and all their wonderful staff and volunteers. They're the only CF organization I'm aware of that offers these opportunities to the general public. Their research activities are also obviously very important, but the CFRI events have played a more significant role in my life as a person with CF.

When I found out about CFRI I finally felt like I connected to other patients.
They take a personal and common sense approach to research, patient out reach and support.
They offer hope and an alternative for the patients and families. CF is a devasatating and lonely disease and the increase in lifespan has proven some medical improvements, but guess what there is no cure. I am now 40 when I was 18 and the gene was discovered we thought a cure was right around the corner. Guess what the wheels of medicine turn slowly. CFRI has been so important to so many and offered those intangibles that is so needed in this community.
Thank You CFRI.Keep up the good work.

CFRI is a results driven organization that never forgets what its mission is. It focuses exclusively on getting answers to the perplexing problems that are presented by cystic fibrosis and sharing the research immediately with those who donate to the organization. It channels money into the hands of researchers and scientists and the constant flow of research and information that is immediately relayed to the community is really impressive. It does not support large marketing or advertising staffs. It is a lean, mean research machine and its impact extends beyond cystic fibrosis as the discoveries made by researchers benefit medicine overall.

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!

Our 5-month-old granddaughter was diagnosed with CF through newborn screening. We were all shocked and devastated. I was a nusing student in the late 60's in Atlanta, GA where I took care of several children with CF, all of whom died before age 3 years. With that in mind, when our granddaughter was diagnosed, I immediately searched the internet for all information I could find and have continued to do so the last 4 months! The CFRI webinars have been a God-send to me and my family. We do not live near a major CF Clinic and this provides us with current best practice information we could not get otherwise.

I have come to know many of the people at CFRI (Isa and Ana Stenzel,
David Sohoo) and my wife helps out with the Mothers Day tea fund raising
campaign. I have attended several CFRI education day conferences.

I think the name of CFRI is a little misleading since I think their main
charter is more "Education" rather than "Research". The research
aspect of it, as far as I can tell, is to sponsor a handful of fellowships
at Stanford (under Jeff Wine) and Berkeley which I consider "education" rather
than "research". Of course education is very important since there needs to be
trained scientists and doctors to actually do the research! But a better
name might be Cystic Fibrosis Education Institute "CFEI".

One question which I suspect a lot of people who are familiar with
CFRI have is "We have the CFF, so why do we need the CFRI?". One question
which I have had to ask myself is "where should I donate MY money to help cure CF".
I have 2 kids with CF and I really want to spend my hard earned money in
the most effective manner possible. I can only contribute a modest amount
of money but I take it seriously. For me it came down to a choice between the
Cystic Fibrosis Foundation (CFF) or CFRI. The CFF is far, far larger in scale
and operates at the national level.

I personally write my check to the CFF because the CFF
has a clear strategy to cure CF and, because of that, I think
their programs actually attract more researchers into the field than
do the CFRI sponsored fellowships. I think the CFF strategy of allocating
money to strategic programs with biotech and pharmaceutical companies for
the CF drug pipeline has a higher probability of resulting in a cure than
does sponsoring 3 or 4 fellowships at Berkeley and Stanford. This is not to
say there is no value in sponsoring these fellowships. There is. I have attended
poster sessions given by these researchers at the CFRI education day
conference and they were outstanding. The researchers were very talented and highly educated
individuals but my sense is that the scope of the problem, finding a cure for
CF, is so huge that has to be tackled at the national level by hundreds of
researchers, physicians across dozens of institutions in a way which
harnesses the interests of pharmaceutical and biotech companies.

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.

Two of my 3 children have CF. They were diagnosed in 1972 and we heard of CFRI (Actually a chapter of the CF Foundation @ the time) and needed information about CF. The members of this group provided that and much more. We were a part of the founding CFRI group in 1975. The ongoing information re discoveries in research, treatments, interaction with others aflicted is a marvelous resourse for those newly diagnosed in addition to those having delt with CF for many years.

CFRI is a wonderful organization that is funding important research in the field of cystic fibrosis. They also host many wonderful events that support those with cystic fibrosis through the sharing of knowledge from those in the medical field and through the sharing of information by others with cystic fibrosis. Our family really respects CFRI. They maintain a low-overhead so you know that any dollars donated to them will be used for the purposes of research or for support of cystic fibrosis patients.

CFRI is a valuable resource to anyone involved in the struggle with cystic fibrosis. Through there newsletters, retreats, and conferences they help get the word out about the latest breakthroughs and updates towards cf.

This past year I was able to attend the annual Family Education conference due to a generous grant from CFRI. Here I learned valuable information about upcoming medications and research in the CF field, I was able to meet with other CF parents to discuss treatments, medications, and just life in general about being a CF family. Vendors were available to discuss vest operations, pharmacies were on hand to talk about medications and treatments. I highly recommend attending this conference to any CF family. Thanks to CFRI for providing this experience - I hope to be able to attend annually!

Please help us for research for cystic fibrosis. my son has it and everyday i think of what it would be like to find a cure. i hate the thought of someday i may have to burry my own little boy, he does vigrious treatmenst everday morning and night to fight for his life. he never has a "normal" day. it is so hard to explain to my 4 year old little boy why he has to take all these medcines and all these treatments. the cystic fibrosis foundation is a great place to donate to. almost 90 cents of every dollar raised goes to research. i have been raising money for a cure ever since my son was diagnoised almost 5 years ago. with out your help there may never be a cure. please put yourselves in our shoes for a brief moment and imagine making your own child go through this everyday and knowing that one day it will kill your child, it may be when there 2 or 30, it dosent matter how old they are, your baby is always your baby. life expantancy right now is only 30 years old if there lucky, there are still lots of children dieing everyday at a much younger age. please help are babys now and donated to the cystic fibrosis foundation, so that one day we can make cf stand for cure found, because it would not be possible with out all of you. thank you for your time! and please donate to this great cause

My cousin has CF and ever since I was 16 I have been involved with CFRI with the tea, camp and the yearly walk-a-thon. They are wonderful with the research and support for those with CF and their families.

I became involved with CFRI in 1995, shortly after my daughter was diagnosed with cystic fibrosis. Since then, the organization has been a vital resource for our family. In addition to funding cutting-edge research and providing a top-notch conference, CFRI produces resource materials that have been invaluable through the years. CFRI’s newsletters, Discovery Series, web site and conference DVDs address a broad range of topics relevant to those impacted by CF. I have served on CFRI’s Board of Directors since 2002, and I know first-hand how efficiently and effectively donations are utilized. Living with CF can be extremely challenging, and CFRI addresses the multi-faceted needs of our community.

Our oldest child has cystic fibrosis, so my husband and I have been attending the CFRI conference for 8 years. The planning and presentation of the conference is remarkable...there is a continual stream of very interesting topics and speakers. Since we are both in the medical field and have been dealing with CF for decades, we thought we were well informed. But we learn something new at each and every conference, and it is inspiring to see how other families deal with the demands of the illness.
We particularly enjoy the seminars led by physicians from far-flung centers, who often have a slightly different approach and challenge our ideas of what is possible within the realm of CF care. And of course, we are always interested in being made aware of what new developments are on the horizon.
The sponsor booths are a big bonus...we can talk directly to their reps and get immediate feedback and anwers to our questions. They are gracious enough to help support the conference, making it a possibility for more families to attend. Overall, it is a fabulous program.
On a lighter note, I REALLY enjoy the hotel that sponsors the meeting; I look forward to their wonderful beds every year. The meals are spectacular, and the conference rooms are always supplied with beverages and writing implements at each seat. I think the hotel management strives to make our weekend away a true respite as well as a fertile learning experience.

My husband and I became associated with CFRI around 1981 when we found out that our only child had CF. CFRI was of more help to us than the local and national foundations supporting and fund raising for CF even though I participated with them in their efforts. We got their newsletters, educational literature and I became a Mother's Day Volunteer for their annual Mother's Day fund raiser. In time, our daughter was accepted at Stanford University and we became more involved with CFRI, attending their yearly conferences and helping with other aspects of their programs. My daughter also volunteered her time. Although we eventually lost her, CFRI was there to console and help us and we have numerous friends we still stay in touch with in the organization. It's a wonderful charity and I'm still a Mother's Day Volunteer and will be doing it again this year and for as long as I can. What impresses me most about CFRI is that you know where your money is going and who is doing research on Cystic Fibrosis. You truly feel you are doing something worthwhile.

I had heard of CFRI for many years through an on-line cystic fibrosis support group. Finally, I wanted to see what all the hoopla was about! My daughter and I jetted from Chicago to San Francisco about six years ago for our first CFRI conference and teen/young adult retreat.

I can not express to you how much both my daughter and I have gained from attending the CFRI conference every year! We call it our "favorite week of the year!"

We now hold an annual fundraiser with our family and friends in Chicago which helps benefit the CFRI conference and retreat!

As a parent of two children with cystic fibrosis, CFRI has embraced our family with support and education. CFRI, which serves patients living and breathing with cystic fibrosis is committed to the community in so many ways. Not only do they raise money for important research, but they provide the vital day to day support necessary to live with this medically intense, life shortening lung disease. It amazes me every time I hear about a new innovative program or educational piece that helps my children deal with the many obstacles they may face. Many times it could be an email about a research study, help with educational challenges, their annual innovative "Mother's Day Tea" or their.

Because of CFRI, my life and my children's lives "Breathe More Freely"!

My son was born with CF in 1993 and it was a roller coaster for my wife and I with two surgeries within the first 3 months.
While he was still in the NICU, but had been diagnosed, we were put in contact with CFRI and started going to their Parent Support Groups meetings that were held monthly at that time - without the great caring, knowledge and advice from all of the great staff, volunteers and people associated with CFRI our journey would have been way more difficult and frightening.
We have kept very close and I couldn't imagine missing their annual CF conference - the insight gained and support from all is incredible.
Any time we have had a problem or scarey moment over the last 17 years we have been able to phone them and get concrete and caring advice on how to go forward - a group that has helped and is helping in huge ways.
Any support you can give will benefit all who suffer with CF.
Craig B.

CFRI is a great organization for so many who have Cystic Fibrosis and their families. Helping to fund research to find a cure and helping CF individuals with College. I am individual who has CF as well and I greatly benefit from CFRI retreat in which many of us can be our self and learn from one another. CFRI is so good on so many levels and is vital to supporting us CF folks.

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

Cystic Fibrosis Research incorporated (CFRI) put a real face to this very real disease of Cystic Fibrosis for me. It was 1984. I was 8 years old. My mom packed my blue hard sided suit case and loaded me up on a van full of strangers. We were all kids and we all had CF. We were all headed to the week long annual CFRI summer camp and this was my first trip of many to come.

I was shy at first. When I arrived off the van we were met with our "thumpers" or guardians for the week. Each camper had his/her own guardian in order to complete the tasks of handing out our daily pills and doing our daily physical therapy. We were taken to a room and weighed upon arrival. The goal was to eat so much in that short 7 days that we would gain weight. All of us were skinny an frail by what this disease doesn't allow our bodies to do, process nutrients the way the "normies" get to digest food.

It was at this camp for cystic fibrosis that I realized my brother and I weren't alone. There were so many other children out there with CF. They were all just like us. That was a huge ego booster. To be one of the "normies" for one week. It wasn't weird to cough or take pills. We all did it. We were all ravenously hungry and ate like we hadn't eaten in weeks only to not gain an ounce. We were all the same.

The CFRI camp no longer exists in this form. It is now the CFRI annual Adult/Teen Retreat. There are no more cabins filled with CFers lined up on bed after bed being beaten for treatments. We stay in single rooms. We aren't allowed to touch each other (three foot rule!) But we are older now and we are there for the emotional support. CFRI has done what all other CF camps failed to do when they were shut down. CFRI has let the camp experience continue on. They let the bonding embrace a new crowd of CFers. I don't know one single Retreat goer that doesn't come away from that week feeling refreshed to take on another year battling this disease.

The disease can be alienating in the real world. CFRI Adult/Teen Retreat is the perfect medicine for the mind, the body and the soul. We laugh and cry and share and learn. It's an amazing experience and could only be made possible through the generous donations CFRI receives throughout the year.

Both my sister and I have Cystic Fibrosis and I regularly receive emails from CFRI updating me about new research and programs that are going on. I am always amazed about the lengths that this company goes to in order to serve the CF community and to better increase our quality of life!

Anyone out there researching fo Cystic Fibrosis and trying to find improvements for the lives of the people living with Cystic Fibrosis deserves 5 Stars!

Our family has been a supporter as well as clients of CFRI for about ten years after we found out that our children have CF. We support this organization because CFRI advocates for cutting edge medical research in the field of Cystic Fibrosis. The grants that they offer attract leaders in the field who produce results.
We like the small family feel to this organization, and feel a connection to the small staff that works hard to serve our CF community.

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.

I feel a great attraction of CFRI is its policy of funding research in Cystic Fibrosis by young medical doctors and/or PHDs to attract them into this field of research..............I believe this brings new energy and ideas into the pursuit of knowledge about this disease........

After moving to N. California, I was looking for a Cystic Fibrosis support group for our family. We had two young children with cf, and dealing with the everyday aspects and expenses had taken a tole on our lives. Having no family here, we felt alone, but what a blessing it was to find the CFRI support groups and summer camps. Our children have grown many rich and wonderful relationships over the years because of the early camps. The camaraderie that is established by the on-line. and occasional meetings, has developed in to a family of 'cf siblings' that no other group can match. Without CFRI our children may have not been as healthy as they are partially due to the CF Conferences we have been able to attend. Each conference brings new and exciting treatments to the cf community and our family. Our "children" are now twenty five years old and almost thirty years old! What an accomplishment, all with the help of CFRI.

The CFRI conference was the best thing my husband and I did for ourselves since our daughter was diagnosed with CF. It helped us so much to deal with this diagnosis. We learned so much from all of the other parents, speakers and presenters.

CFRI is a great organization that doesn not get enough attention for all the hard work they do and education they provide! CFRI is truly caring about those of us who need information and are affected by Cystic Fibrosis.

When my daughter was diagnosed with CF at age two, I tried to find information and support at other agencies, but came up frustrated and scared. After I found CFRI, I was connected with all that I and my family needed to cope with this challenging disease. I became a regular participant in the Family Education Conference where I had access to valuable resources like medical experts, a support group of other parents,latest research findings and most of all hope. There is nothing else like CFRI for the family who is trying to cope with CF. I have been a loyal supporter for 20 years.

Jessie was about one or two years old when we found out about CFRI through her Pulmanologist at Kaiser. I was so clueless about the disease all I knew was it was terminal. I was very greatful to find out about CFRI. I immediately signed up for whatever I could to have contact with other CF parents. Since then, I've gone to every CFRI conference , Mothers Day Tea kick offs and Some education days that CFRI offered. It gave me so much information on the newest advances in fighting the disease that I've been able to work with my Pulmanoligsts to try some of the newest available medications out there. He has been so imprest by the knowledge I've gained from CFRI that he wants to go to a conference himself. CFRI not only gave me knowledge of the disease but connections to other parents of CF children who have given my husband and I support and excellent advice. They have helped to support my daughter as well as our family through some very difficult times. CFRI continues to help us gain the knowledge and support we need to ensure the best possible life for Jessie and our family in dealing with a very serious and difficult disease. I can't thank them enough!

Cystic Fibrosis Reserach Inc is a wonderful organization that does not receive enough attention.

They provided a lifeline to both my brother who had CF and myself, his caretaker. They provide us with information, support, and the ability to be with other kids who had the same disease.

The ability to be able to what other kids and caretakers go through was amazing as you realized you weren't alone.

This organization helped my brother live a better life before this horrible disease took him. They deserve every recognition for the wonderful work that they do.

This is an excellent tool for my son and our family in keeping up with all of the information that is very important to his care and future. This organization helps bring to light many daily battles we contend with and helps us get resources for issues and problems. We are fortunate to have this organzation for our issues and hope it continues to deliver hope for us and all families going thru this journey together.

CFRI is a group dedicated to research to help find a cure for Cystic Fibrosis. They are not as publicized as the Cystic Fibrosis Foundation and does not get as much money as they do. They do hands on research and are diligent to find a cure. I will support them until they can find a cure for Cystic Fibrosis. I have a daughter with CF, so their work is especially important to me.

As an adult with CF, I have found the CFRI programs and conferences have helped me immensely. The encouragement and overwhelming support that my spouse (nonCF) and I have received at the conferences always leaves us feeling more physical and mentally able to deal with this disease. We have developed lasting friendships through the support groups. The outstanding newsletter also keeps us abreast of research, treatments and assistance programs. Many thanks to CFRI.

CFRI provides Research Grants, sponsors CF-ers and their families to attend a retreat and a national conference every year, provides group sessions for anyone who wants to talk about CF right here in the bay area or by SKYPE, and so much more....Withuout CFRI in our lives we would not be ready for whatever comes next in this disease. They are the lifeline for everyone in our community and abroad.

My role with CFRI is more than just a client served. I've also volunteered there, and let me tell you do people at CFRI work hard. With educational events like the Education Conference that happens every summer, scholarship information and updates, and updates on research projects, CFRI has helped so many people cope with having cystic fibrosis in their lives. Without CFRI, my family and I would be so isolated and lost.

CFRI has given me a CF community. CF is not an easy disease, but CFRI has been it that much easier by letting people with cf get together to share their stories and to learn from one another. The retreat that CFRI puts on every year has been a great outlet for me to express myself and feel normal...no other organization in the CF community provides this type of event.

My foundation, Maggie's Miracle Makers is proud to be a donor to CFRI. I love giving back to an organization that has given me knowledge and power with my own disease. The conference that is put on by CFRI each year is a true testament to their greatness and to how wonderful their staff works each year to put on such an event. I cannot thank them enough for what they have given me and the people I have been able to connect with because of CFRI. This organization does so much for our community they most definitely deserve a prize for their hard work and dediation to this disease.

When we received our daughters diagnosis, CFRI was there for us. They provided us information on the disease, but more importantly they connected us with people directly impacted by Cystic Fibrosis. This allowed us to find out first hand what life would be like, and how to best approach treatment. Because CFRI was there for us when we needed them most, we continue to fundraise and give back to them.