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February 26, 2014
1 person found this review helpful

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1 previous review
September 6, 2013

I got involved with NephCure after learning one if my business partners children suffers from FSGS. After researching and learning more about the disease, it is clear that NephCure is the go-to resour... more

February 26, 2014
1 person found this review helpful

My business partner's son was diagnosed with FSGS and from the first time I heard about it's devastating effects I knew I wanted to help. When he got me involved with the NephCure Foundation I immediately became intrigued by their transparency, responsiveness, and dedication to finding a cure. Their staff is top-notch and they are constantly working around the clock to help find better treatments and fund research to one day find a cure for this debilitating disease. I would highly recommend their organization to anyone suffering from FSGS or Nephrotic Syndrome, or anyone looking for a great non-profit to donate to or volunteer time to!

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

September 6, 2013

I got involved with NephCure after learning one if my business partners children suffers from FSGS. After researching and learning more about the disease, it is clear that NephCure is the go-to resource for supporting patients and raising funds to find a cure for this disease. The events NephCure puts on are top notch as are its staff. NephCure is constantly working with leading drug companies and research institutions to find a cure that is so badly needed. Their work and efforts are exemplary.

Ways to make it better...

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

Work harder to get more patients registered and increase fundraising.

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

September 11, 2013

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September 11, 2013

Four years ago when my daughter was diagnosed with a rare kidney disease, I turned to the internet for help and support and found the NephCure Foundation. Its staff has been instrumental in helping our family cope and they inspire us daily to fight for the treatment and cure of this insidious disease. We feel like a small army has been amassed by the NephCure Foundation and that we are not alone in our personal battle but join with countless others around the country facing the same questions and concerns.

Ways to make it better...

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

Have another office on the West Coast where I live.

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?

2013

September 8, 2013

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September 8, 2013

NephCure is a beacon of hope for families like ours dealing with the rare and debilitating kidney diseases Nephrotic Syndrome and FSGS. Our 15 year old son has Nephrotic Syndrome. When he was diagnosed in 1999, there was no one to turn to - we didn't know anyone else with the disease. NephCure was organized by a group of parents and has grown by leaps and bounds in the past 10 year through the dedication of familes, staff, volunteers, and the nephrology community. We now know dozens of families locally and many more online due, all due to our involvement with NephCure. NephCure is funding research to find the cause and cure of NS/FSGS, advocating on Capitol Hill for more funding, working with biopharmaceutical companies, and providing a forums for families to get together to share our stories. We need help to keep it going, so no child or adult has to deal with kidney failure, dialysis or a failed transplant.

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?

2013

September 5, 2013
1 person found this review helpful

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September 5, 2013
1 person found this review helpful

my name is michael levine and my ten year old son matthew was dianosed with FSGS 7 years ago. i joined the board of the nephcure foundation as this foundation had been a life savor to my family over the past 7 years. the nephcure foundation(www.nephcure.org) does incredible work for the families that are battling fsgs and nephrotic syndrome. the foundation is an incredible source of inspiration, trying to fond a cure for these two desvastating kidney diseases that have no cure. the foundation is an incredible source of knowledge with regards to doctors and drugs that maybe helpful in this battle. the foundation has an impeccable reputation on capitol hill, and in the research and foundation world around the world. this foundation is driven to find a cure for Fsgs and nephrotic sydnrome. for this foundation, failure is not an option. the nephcure foundation allows us to dream that a miracle is possible. they give us hope against the greatest odds and they give us the strength to fight harder each and every day . thanks very much to the nephcure foundation. love michael, dana, matthew and sydney levine.

Ways to make it better...

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

this disease and foundation have a huge identity crisis right now. so what i am going to change is the amount of awareness and exposure that this disease and foundation get in the world today. so we can create a miracle of a cure for these two devastating kidney destroying diseases called fsgs and nephrotic syndrome that destroy kidneys, lives and families in their path.

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?

2013

June 16, 2011
1 person found this review helpful

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June 16, 2011
1 person found this review helpful

When my 12-year-old son was diagnosed with the rare kidney disease called Nephrotic syndrome/FSGS when he was 18 months old there was NO organization to turn to meet others who knew what we were going through and no one was directing research to cure it. We felt powerless to help him. Thankfully this is no longer the case --NephCure is dedicated to helping families and fund the research.

NephCure gave us HOPE that we can work together to cure this disease that is the second leading cause of kidney failure in children. Please help this worthy rare disease nonprofit so no other child will have to experience kidney failure, dialysis and a failed transplant.


The Great!

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

Through NephCure I have met numerous families at our local chapter meetings, at our walk, as well through their online community. I've also been able to meet the researchers NephCure is funding at free patient seminars.

Ways to make it better...

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

Increase volunteer participation and find more funding

June 9, 2011

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June 9, 2011

my name is michael levine. my 8 year old son matthew has been battling this terrible kidney destroying disease called fsgs for 5 years now. i joined the nephcure foundation(www.nephcure.org) to help create a miracle for matthew and all the others battling these devastating kidney diseases called fsgs and nephrotic syndrome. please help us create this miracle by trying to help out the only foundation committed to finding a cure for these two devastating kidney diseases. we have to make sure that no one else suffers and has to battle these terrible kidney destroying diseases. fsgs is the second leading cause of kidney failure in children.

The Great!

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

the nephcure foundation is currently funding 30 research projects around the glode. we are also helping to fund a registry for fsgs and nephrotic syndrome patients.

Ways to make it better...

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

help this foundation get the word out to the public and the world about the great work that this foundation does and help them get the word out about these two terrible kidney destroying diseases called fsgs and nephrotic syndrome. these are two kidney diseases that are grwoing in leaps and bounds and have no cure. right now we have an identity crisis and i am going to help change that.

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