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54 Reviews
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February 18, 2014

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February 18, 2014

I appreciate all they have done, particularly for the children who have FSGS and Nephrotic Syndrome. However, they can't seem to get their volunteer base organized in many places. Things worked fine when I was in San Diego and we actually got a walk off the ground (although my schedule prevented me from helping out). Then I moved to northern Florida and there was no organization in my city/region and the person/people that were supposed to be working on coordinating that part of Florida never contacted me. I have since moved to the Charleston WV area and again no one has contacted me after I requested information for my region. Another problem is the emphasis on the children patients of these diseases, I am a 47 year old male who was diagnosed 9 years ago and will have this disease for the rest of my life, whether I ever need dialysis or not. Most children get it, need a transplant quickly, get it, and for the most part, except for making sure the transplant sticks, they no longer have the disease.

Ways to make it better...

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

Organize the clients/volunteers in areas better.

More feedback...

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

A little

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

Unlikely

How do you feel you were treated by this organization?

Somewhat badly

When was your last experience with this nonprofit?

2011

December 8, 2013

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December 8, 2013

As a coping organization, NephCure tries to fill an empty space. As a resource for patients, they are far below expectations of an organization trying to help and serve patients. Helping to understand the disease state, most doctors at NephCure are stuck in 1970's protocols. Research being funded is of limited use for NS, and largely will result in no improved protocols to treat the condition. Better research is being done globally, not by NephCure and the NIH. Doctors and researchers here are looking for a cash cow to fund their research, which will likely result in no answers in the future. A simple doctor registry is beyond the scope of this foundation. If I were to donate money to this organization, I would seriously consider where my money went. NephCure is not an efficient foundation, and I believe the true desire to operate as a foundation is false.

Ways to make it better...

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

Close it down and start with a new set of leaders that treat the patients with the highest regard. Patients first, researchers second. Doctors and researchers will always put their own interest first. I believe NephCure cannot be changed, as it currently operates.

More feedback...

How does this organization compare with others in the same sector?

Somewhat badly

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

None

Will you recommend this organization to others?

No

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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1 previous review
August 14, 2011

My son was diagnosed 7 years ago with Nephrotic Syndrome -- natrually I went on line to try and learn more. Nephcure Foundation contacted me and i have relied on their help ever since. They are a d... more

September 8, 2013

Nephcure has become part of our family. When my son was first diagnosed with Nephrotic Syndrome, I found Nephcure or i should say they found me and gave me the support I needed. For the last 8 years, i have leaned on nephcure and they have always helped me and my family in so many ways. Having Nephcure as a resource has been life saving both emotionally and physically. I commend the work that they do and am grateful to have this organization in mt life.

Ways to make it better...

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

Make it even bigger and more well-known. Grant them marketing dollars to help with their important initiatives.

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

August 14, 2011

My son was diagnosed 7 years ago with Nephrotic Syndrome -- natrually I went on line to try and learn more. Nephcure Foundation contacted me and i have relied on their help ever since. They are a dedicated team and help bring families of those suffering these diseases together. Thanks Nephcure!

The Great!

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

They helped refer me to doctors and helped bring me together with other families going through the same thing.

Ways to make it better...

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

make it even bigger and more well-known.

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 8, 2013

more


1 previous review
June 12, 2011

My 7 year old son was diagnosed three years ago with Nephrotic Syndrome. Until we found NephCure, we felt so lost and alone. NephCure connected us with the right doctors, who got our son on the right ... more

September 8, 2013

Nephcure has been our safety net. When our son was diagnosed with Nephrotic Syndrome 5 years ago, at age 4, we had no one to talk to. We were scared, alone and had no clue what to do. Nephcure connected us with families going through the same thing, with doctors to get the best treatment and with research to help us make the best medical decisions. Nephcure is family to us and we are so thankful to the organization. It does incredible work--on the research front and with the families being affected.

Ways to make it better...

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

Nothing!!

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?

A lot

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

June 12, 2011

My 7 year old son was diagnosed three years ago with Nephrotic Syndrome. Until we found NephCure, we felt so lost and alone. NephCure connected us with the right doctors, who got our son on the right medication and provided support for us. In addition, they connected us with other families in our area coping with this very difficult disease. They truly care. Their executive director has visited our family TWICE to check up on us. Before NepCure we felt scared and hopeless. Now we feel like we have a safety net and are optimistic about the future.

The Great!

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

Helping us to find care for our son and support for our family.

Ways to make it better...

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

change nothing. I can't say enough about how amazing this committed group is.

September 8, 2013

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September 8, 2013

Nephcure is an amazingly unappreciated organization that has not only provided excellent funding for research, but has also made inroads with government, private, and the public sector to increase awareness for these terrible misunderstood diseases. Nephcure is either directly or indirectly responsible for putting together special events such as Advocacy Day in Washington DC, sponsoring races, galas, and various other fundraising opportunities. In the past few years in particular they have made tremendous headway. I have assisted in several fundraising and awareness raising events with Nephcure and am also a patient of Nephrotic Syndrome. Nephcure has provided me with unbelievable amounts of hope and an amazing network of people and resources with which to battle this disease.

Ways to make it better...

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

Nephcure is unique in that it is one of the few organizations that funnels a majority of its profits towards research. However, would like to see more events and tools centered around helping patients on the management end via natural approaches. There is much to be said for the management and containment of this disease via diet and nutrition, stress-management, and lifestyle changes. Also, an organized forum for patients to report information and reviews on current drugs & treatments.

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 7, 2013

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September 7, 2013

My daughter was diagnosed with Nephrotic Syndrome at 2.5 years old, which progressed to FSGS. Finding Nephcure gave us hope that there were other families dealing with what we were......Nephcure is the only organization that is searching for a cure and helping families dealing with this horrific illness.

Nephcure is the much needed resource for anyone dealing with Nephrotic Syndrome.

More feedback...

When was your last experience with this nonprofit?

2013

September 7, 2013

more

September 7, 2013

My son at a young age had a breathing ailment (nothing related to Nephcure's mission) that thank god he has grown out of, but with that stated the months and years dealing with the issue of a sick child made me aware of the pain and strength parents deal with when there kids are sick. I applaud Nephcure for not only its mission but its leadership and there never ending quest to find the cure that I truly believe and pray will happen one day.

Scott D

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?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

September 7, 2013

more

September 7, 2013

Nephcure is a wonderful organization that has touched many lives and continues a relentless pursuit to one day find a cure for this terrible disease .I am privileged to to have been involved in this cause for many years in a variety of ways and look forward to continue support them in any way . My good friend Michael Levine's son is afflicted with this condition and upon finding out I felt that I wanted to help As much as possible . Michael and Nephcure do countless fund raising events to raise awareness and fund research for this disease . These events will give anyone a great indication of the important work they do and are touching as well . I have never seen an organization and people like Michael that have been so dedicated to their cause . It is very inspiring . Todd Geller

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

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