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

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
148 Reviews
1234.945955
Write A Review
February 26, 2011
2 people found this review helpful

more

Review from Guidestar
February 26, 2011
2 people found this review helpful

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.

The Great!

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

Expanding my knowledge of CF care.

Ways to make it better...

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

Give them more money to make them a more prevalent player in the national CF community.

More feedback...

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

Life-changing

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

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

CF email listserve. Solicitation for speakers about 6 years ago.

What, if any, change in your life has this group encouraged?

My knowledge of CF treatments and care and CF friends I've made.

When was your last experience with this nonprofit?

2010

February 26, 2011
2 people found this review helpful

more

Review from Guidestar
February 26, 2011
2 people found this review helpful

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.

The Great!

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

Attened the functions, donate and contribute.

Ways to make it better...

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

Give them more recognition for what they do.

February 26, 2011
2 people found this review helpful

more

Review from Guidestar
February 26, 2011
2 people found this review helpful

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.

The Great!

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

my child benefits from discoveries made here

Ways to make it better...

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

not a thing except perhaps spread the word so that people who are able can feel comfortable donating and knowing that their money is well spent and well directed for the benefit of many, as it should always be but often isn't when donating to other organizations.

February 26, 2011
2 people found this review helpful

more

Review from Guidestar
February 26, 2011
2 people found this review helpful

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!

The Great!

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

my daily work

Ways to make it better...

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

make it bigger

February 25, 2011
2 people found this review helpful

more

Review from Guidestar
February 25, 2011
2 people found this review helpful

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.

The Great!

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

expansion of knowledge which has changed my negative attitude toward CFprognosis

Ways to make it better...

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

provide ongoing emotional support for families of newborns, finding a way to make that initial connection; also provide information for care of INFANTS with CF which is very different than toddlers or older children.

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?

Quite well

How did you find this group?

internet search

What, if any, change in your life has this group encouraged?

share our experience with CF - knowledge is POWER! (family advocacy!!)

When was your last experience with this nonprofit?

2011

February 25, 2011
2 people found this review helpful

more

February 25, 2011
2 people found this review helpful

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.

The Great!

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

The CFRI annual conference is a fire hydrant of useful information on all things CF. I would highly reccomend it to parents of newborn children with CF. I really appreciated meeting with parents of CF kids and grown adults with CF. It was a great source of support and hope when my wife and I really needed it. I have not attended any "CF camps" but my children may one day when they become teenagers!

Ways to make it better...

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

I would reorganize CFRI to be the south bay chapter of the CFF.

February 25, 2011
2 people found this review helpful

more

Review from Guidestar
February 25, 2011
2 people found this review helpful

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.

The Great!

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

See notes above

Ways to make it better...

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

Can't think of many ways to improve on this incredible organization--except maybe to get them to expand to the East coast!

February 25, 2011
2 people found this review helpful

more

February 25, 2011
2 people found this review helpful

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.

The Great!

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

Information and personal support.

Ways to make it better...

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

Continue to support this energetic, informative and active group.

February 25, 2011
2 people found this review helpful

more

Review from Guidestar
February 25, 2011
2 people found this review helpful

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.

The Great!

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

I have seen the results of the research they fund.

Ways to make it better...

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

I would hope that more people would donate to CFRI so that they could do more good work.

February 25, 2011
2 people found this review helpful

more

Review from Guidestar
February 25, 2011
2 people found this review helpful

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.

The Great!

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

helping the whole community. They provide really great information.

Ways to make it better...

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

get involved and help out more.

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