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Jereme P.

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CYSTIC FIBROSIS RESEARCH INC
May 30, 2013

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.

Ways to make it better...

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

Give them more money so that they could grow throughout the country and effect more CF patients through out the country.

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

When was your last experience with this nonprofit?

2013

MY ROLE:
Client Served

CYSTIC FIBROSIS RESEARCH INC
October 28, 2012

I have experience with both CFRI and CFF and I would recommend CFRI any day of the week. They truly care about the CFer and our well being. They do whatever they can at anytime for anyone effected by CF. I have been associated with CFRI in some fashion now for over 25 years. They sponsored the CF Camps I went to as a kid, and then the Adult Retreats as I got older. They also sponsored the CF Conferences for not only those with CF but also our families and doctors. I have had the pleasure of speaking at the Conferences and they are highly informative and also an eye opener to many of the professionals there. The Retreats are great places of support for those with CF and our loved ones. Because of the Retreat my wife has had lots of support of others that have dealt with having someone with CF they love. She knows so many more people she can go to for advice because of CFRI. If it wasn't for CFRI most CFers would never get to meet others with CF face to face any more. CFRI not only makes sure that they support research but they actually support those of us dealing CF day in and day out.

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

When was your last experience with this nonprofit?

2012

MY ROLE:
Client Served