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54 Reviews
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October 16, 2014

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October 16, 2014

My son Mason was diagnosed when he was one year and three months old. The first year of us knowing he has NS was so hard. Not knowing what will happen to him, not knowing what NS was really. I mourned for my sons good health that was now taken away by NS. After that year I started looking further into NS I found groups on Facebook and those groups told me about NephCure. NephCure has been wonderful full of information and support. I have now became involved with helping with the Dallas and Houston walks. It gives my son the chance to meet other kids that also have NS and FSGS. He is always a happy boy and when he becomes older I would like him to know that he has a support group that he is not alone in this battle. NephCure has done amazing work on spreading the awareness of NS and FSGS. Great JOB NephCure.
February 21, 2014

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February 21, 2014

I live in Canada and I have been a proud supporter and volunteer for the NephCure Foundation since 2008. My involvement began when my son was diagnosed with Nephrotic Syndrome at the age of 22 months. Since then I have had the pleasure and privilege of meeting some remarkable people.
NephCure helped me get a better understanding of what this disease is all about and help educate others who have never heard of it.
The NephCure Foundation is there for you when you are in need of support!

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

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

February 21, 2014

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February 21, 2014

I live in Canada and Nephcure gave me hope after my daughter was diagnosed with FSGS at the age of two. I connected with them at a Dallas run and ever since then they have been super supportive and caring. Every time I speak with one of them they always ask how my daughter is.
Nephcure makes
me feel like I am part of a family. They understand how hard it is.

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?

2014

February 20, 2014

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2 previous reviews - show all
September 6, 2013

I have becomes involved with the nephcure foundation when my boss's son was diagnosed with FSGS...it's very scary when you have no one to turn too!! And that is when we or at least I was introduced to... more

February 20, 2014

When my boss's son was diagnosed with FSGS they had no where to turn to! The Nephcure Foundation became there support and foundation...the Nephcure Foundation has become there army...I am not a good writer but all I am trying to convey is that they help families everyday who are alone with this disease with no known cure, The Necphure foundation helps with fund raising, seminars , and research so that one day hopefully they will be out of business...I have never seen an organization become a family member and a beacon of hope so strongly with family members trying to save there loved ones...we would be lost without the Nehcure foundation

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?

2014

September 6, 2013

I have becomes involved with the nephcure foundation when my boss's son was diagnosed with FSGS...it's very scary when you have no one to turn too!! And that is when we or at least I was introduced to the nephcure foundation . They are to help connecting people from all over the world!! Raising money to help all these children in need . And never giving up on finding a cure ... I would be lost without each and every member who dedicate there lives to help family in there time of need with hope and never ending research so that one day hopefully they will no longer be a need!!! I am not a writer but all I can say is that this foundation performs miracles everyday!!!

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

June 10, 2011

I was introduced to the Nephcure foundation when a close friend of mine son was diagnosed with F.S.G.S a very rare kidney disease…the family did not know who to turn to…
86 cents out of every dollar they raise goes to research and education. They are helping to fund 30 research projects around
the world. They are also helping to fund a database and registry for F.S.G.S (Focal Segmental Glomerusclerosis) and Nephrotic Syndrome patients. Also there board members and volunteers work day and night trying to come up with events and networking ideas to get this disease the attention it deserves….Since it is a rare disease (though becoming an epidemic)…most children go undiagnosed until its too late simple because there symptoms goes unnoticed, also because of HIPA laws…it is very hard for families to find help…

This non for profit is a miracle for anyone whose life is touched with this horrific disease…there passion in finding a cure and helping people now in the present find stability in their lives…is a true miracle…
www.nephcure.org

The Great!

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

In fund raising, and helping to educate community about Chronic kidney dieases

Ways to make it better...

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

Make it bigger

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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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 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

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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

September 7, 2013

more

September 7, 2013

My son has FSGS. This organization has helped us through very hard times with its support. Helped us get through many struggles and does an excellent job in raising money and awareness to find a cure.

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?

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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