Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
133 Reviews
1234.939855
| 1 ... 9 10 1112 |
Write A Review
February 23, 2011
1 person found this review helpful

more

Review from Guidestar
February 23, 2011
1 person found this review helpful

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.

The Great!

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

that I am better informed about CF research and treatments and am a better advocate for my daughter.

Ways to make it better...

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

wish that it had even more funding to support its important research and expand its phenomenal advocacy and support services.

February 23, 2011
1 person found this review helpful

more

Review from Guidestar
February 23, 2011
1 person found this review helpful

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.

The Great!

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

I've been enriched by the opportunity to meet other parents of adult children living with cystic fibrosis. We share all of the information with our son, and implement changes in his health care when appropriate.

Ways to make it better...

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

I think that a task force needs to address the issue of excluding CF patients from attending the conference because of prior sputum cultures. I totally understand the concept of preventing cross-contamination, but a blanket rule made 12-15 years ago does not apply to today's crop of patients living with the disease.

February 23, 2011
1 person found this review helpful

more

Review from Guidestar
February 23, 2011
1 person found this review helpful

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.

The Great!

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

My daily life. CFRI has some wonderful literature and educational materials that helped in so many ways to understand as much as possible what CFRI is all about. I learned to give my daughter and our family as normal a life as possible but it has turned out to be an extraordinary life especially for our daughter. I could call CFRI too and always got excellent advice and feedback.

Ways to make it better...

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

There is so much more I could add to the positive results of this organzation but this section is for what changes I could make so I guess I would say . . . find ways for more exposure. I think it would be great for them to have a "hotline" to answer questions from people all over the country. I know CFRI works hard to connect with many other organizations to share and network the results of research, events related to CF and fund raising and I would want to expand that.

February 23, 2011
1 person found this review helpful

more

Review from Guidestar
February 23, 2011
1 person found this review helpful

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!

The Great!

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

The smiles, laughs and stories from my daughter with CF.

Ways to make it better...

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

Move it to Chicago...or better yet, move me to San Francisco!

February 23, 2011
1 person found this review helpful

more

Review from Guidestar
February 23, 2011
1 person found this review helpful

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"!

The Great!

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

so many ways. Their mission statement has matched my family's needs by providing educational and personal support, and to spread awareness of cystic fibrosis, a life-threatening genetic disease. Their vision gives hope and encouragement to families living with cystic fibrosis (CF) and help to all who have this challenging disease attain the highest possible quality of life.

Ways to make it better...

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

Their goals are achieved through all avenues of their organization. As they continue to grow, families will be greatly impacted by their ongoing vision, which is to directly benefit patients living with CF and provide direct benefit to those trying to conquer the disease and become self-sustaining, independent members of the community.

February 23, 2011
1 person found this review helpful

more

Review from Guidestar
February 23, 2011
1 person found this review helpful

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.

The Great!

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

Our family has been supported - see comments above.

Ways to make it better...

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

Give them a million dollars if I had it!

February 23, 2011
1 person found this review helpful

more

Review from Guidestar
February 23, 2011
1 person found this review helpful

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.

The Great!

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

I've had the opportunity to meet so good friends and people that really care so much.

Ways to make it better...

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

Promote this organization and hire more staff. Bigger is better.

More feedback...

Will you volunteer or donate to this organization?

Likely

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

A lot

When was your last experience with this nonprofit?

2010

February 23, 2011
1 person found this review helpful

more

Review from Guidestar
February 23, 2011
1 person found this review helpful

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

The Great!

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

CFRI , with their researchers & educational programs have taught us in our pharmacy the various items & medications & treatments that make us a true specialty pharmacy & are the very best & newest out there. We are then able to pass on to our patients in our CF world, We have been here for 26 years . we started this when Erin was born & we were told she had CF. We didnt have a clue. CFRI educated us fully thru their many , many programs & the researchers who came to speak & teach. .

Ways to make it better...

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

Have them known all over the USA, so more folks would know to contribute to their great cause..

February 23, 2011
1 person found this review helpful

more

Review from Guidestar
February 23, 2011
1 person found this review helpful

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.

The Great!

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

The is no dollar amount to be placed on the experience a CFer can take away from a week long Retreat by CFRI. The emotional highs and lows during the week feed the CF soul exactly what it needs to continue battling this horrible disease, for which there is no cure. Being around other comrades with CF is just what the doctor ordered, even with the strict infection control policies now in place.

Ways to make it better...

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

Increase funding to CFRI so they could do even more good in the Cystic Fibrosis Community. We are a one of a kind group with one goal in mind, TO LIVE. We all want to live and breathe without effort. The only way to do that is to find a cure. The only way to find a cure is to support fabulous organizations like CFRI.

February 23, 2011
1 person found this review helpful

more

Review from Guidestar
February 23, 2011
1 person found this review helpful

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!

The Great!

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

Every email that I read and every breath I breathe with the research that they have accomplished.

Ways to make it better...

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

Increase their funds so as to receive more information!

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers

3 hours of volunteer time for this nonprofit will...

Help with office clerical duties and support Volunteer