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133 Reviews
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February 22, 2011

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Review from Guidestar
February 22, 2011

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.

The Great!

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

emails, and webinars, educational opportunites, research studies and resources

Ways to make it better...

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

like it to be a national organization

February 22, 2011
1 person found this review helpful

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Review from Guidestar
February 22, 2011
1 person found this review helpful

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.

The Great!

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

their support of Cystic Fibrosis and dedication to not only finding a cure but helping patients have better quality of life.

Ways to make it better...

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

Give them more money so they can find a cure faster

February 22, 2011
1 person found this review helpful

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Review from Guidestar
February 22, 2011
1 person found this review helpful

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.

The Great!

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

As a speaker for one of the annual conferences, I was able to discuss my experience as an adult with a career. Connecting with parents of children with CF and other adults regarding careers was a great opportunity and learning experience.

Ways to make it better...

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

Have more frequent conferences!

February 22, 2011
1 person found this review helpful

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Review from Guidestar
February 22, 2011
1 person found this review helpful

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.

The Great!

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

every way possible through education, comradery and unique access to research Drs that I never would've had without CFRI. I'm smarter, emotionally stronger and confident that my son is getting the best that the CF world has to offer.

Ways to make it better...

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

like to see CFRI expanded to every city in the world so the benfits of CFRI could be experienced by every Cf-er and their families everywhere.

February 22, 2011
1 person found this review helpful

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Review from Guidestar
February 22, 2011
1 person found this review helpful

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.

The Great!

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

the hospital; I was sick one time, and someone I knew from the organization came and brought me a gift from CFRI.

Ways to make it better...

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

make CFRI larger with more donors, so that more families can get help coping with cystic fibrosis.

February 22, 2011
1 person found this review helpful

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Review from Guidestar
February 22, 2011
1 person found this review helpful

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.

The Great!

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

I have personally experienced the results of this organization in the retreat they hold each year. It is a great place to talk to others with this disease and to have a sense of community. Their conference has given me so much knowledge over the past 6 years, which has in turn made me take better care of myself.

Ways to make it better...

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

Bring it to Chicago, so I could reap its benefits more often! Living in Chicago, it is hard to participate as much in this organization as I would like...but I will never stop supporting CFRI.

February 22, 2011
1 person found this review helpful

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February 22, 2011
1 person found this review helpful

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.

The Great!

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

the health and well being of my daughter.

Ways to make it better...

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

can't think of anything.

February 22, 2011
1 person found this review helpful

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Review from Guidestar
February 22, 2011
1 person found this review helpful

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.

The Great!

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

the health and well being of my daughter.

Ways to make it better...

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

can't think of anything.

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