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December 1, 2014
2 people found this review helpful

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December 1, 2014
2 people found this review helpful

I served CFRI as a summer intern (2013) and look back on the experience as a great one. I worked closely with the CFRI staff and volunteers to help with planning their annual summer conference and adult/teen retreat. They are a very lovely organization to work with; they are dedicated to their mission and are caring to their community. I was very touched by all the people and families I've met during my summer. The skills and knowledge that I gained from working at CFRI have followed with me throughout college and will beyond graduation!
October 7, 2014
1 person found this review helpful

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October 7, 2014
1 person found this review helpful

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

Ways to make it better...

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

I wish it was more centrally located for easier & ls expensive to attend & travel etc. costs. It has such great speakers & their educational program is great.

More feedback...

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2014

August 12, 2014
1 person found this review helpful

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August 12, 2014
1 person found this review helpful

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.

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How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2014

August 8, 2014
1 person found this review helpful

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August 8, 2014
1 person found this review helpful

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.

More feedback...

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

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2014

August 7, 2014
1 person found this review helpful

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August 7, 2014
1 person found this review helpful

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.

More feedback...

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2014

August 7, 2014
1 person found this review helpful

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2 previous reviews - show all
April 9, 2013

I have been involved with CFRI since our grandson was diagnosed with CF just before turning 3 years old. Because of its sharing of information about CF through their annual summer conference, assisti... more

August 7, 2014
1 person found this review helpful

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

Ways to make it better...

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

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

More feedback...

Would you volunteer for this group again?

Definitely

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

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

April 9, 2013
2 people found this review helpful

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

More feedback...

Would you volunteer for this group again?

Definitely

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

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

February 28, 2011
1 person found this review helpful

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

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

The Great!

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

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

Ways to make it better...

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

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

August 7, 2014
1 person found this review helpful

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1 previous review
November 8, 2012

Cystic Fibrosis Research, Inc is driven by a comprehensive mission to provide scientific research and personal support. These two elements are essential. CFRI staff and volunteers are cheerfully ded... more

August 7, 2014
1 person found this review helpful

CFRI is focused on leading edge research aimed at a cure for Cystic Fibrosis. CFRI also provides a network of warm and caring individuals who empathize and nurture CF patients and their families. Conscientious application of funds is the hallmark of this outstanding organization.

More feedback...

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

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2014

November 8, 2012
2 people found this review helpful

Cystic Fibrosis Research, Inc is driven by a comprehensive mission to provide scientific research and personal support. These two elements are essential. CFRI staff and volunteers are cheerfully dedicated.

More feedback...

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

Definitely

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

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

August 7, 2014
1 person found this review helpful

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August 7, 2014
1 person found this review helpful

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

Ways to make it better...

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

not change a thing

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

August 7, 2014
1 person found this review helpful

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August 7, 2014
1 person found this review helpful

The staff and volunteers with this non profit are 100% committed to helping individuals and families obtain the latest information available to fully understand this genetic condition and deal with the social, economical and healthcare issues that arise. They are also committed to help fund research that may lead to cures for Cystic Fibrosis. I have truly enjoyed volunteering with this non profit organization over the last two years. D.Zimmerman

More feedback...

Would you volunteer for this group again?

Definitely

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

A lot

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

August 7, 2014
1 person found this review helpful

more

August 7, 2014
1 person found this review helpful

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.

More feedback...

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2014

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