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February 20, 2014

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February 20, 2014

When you, your child and/or a family member hears a diagnosis for FSGS, you realize that this is not a disease that is widely known and/or curable & then you realize how very alone you are. That's a scary place to be with no one to turn to who may have an answer and/or a helping hand.

Well you do have someone in your corner - The Nephcure Foundation. They are there for support, guidance and to make everyone aware of this deadly disease which has not gotten the exposure and support that other diseases have.

It is easier to criticize an organization than to give them props for trying to do the right thing, i.e. to save children that are dying and to provide a service that the victims of this disease can turn to. They have been instrumental in bringing attention to this horrible disease, so support their cause. Their only goal is to save a life.

More feedback...

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

A lot

When was your last experience with this nonprofit?

2013

September 6, 2013

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September 6, 2013

The Nephcure is an AMAZING organization!! I don't know what I'd do without all of their help. My 15 year old son was diagnosed with nephrotic syndrome/FSGS at the age of 3. He has had some good years and some rough ones but with the help of everybody involved with Nephcure we get through it. I feel better each time with a new event that we are getting closer to raising enough money to find a cure and its always better talking to others going through the same things as you. A lot of people who have kids that aren't sick just don't get it sometimes. I would be so lost without the Nephcure Foundation!!!

Ways to make it better...

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

there needs to be more awareness....

More feedback...

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2013

September 5, 2013

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September 5, 2013

Our 8 year old daughter was diagnosed in December 2012, and given the frustrating and idiopathic natre of this condition, Nephcure was our first connection to others going through what we were going through and after attending a lunch and learn, we gained perspective on what laid ahead in addition to amazing contacts that helped guide us in both medical and home treatment. Since then, we held a fundraiser in Los Angeles as it is clear that Nephcure has a singular mission, smart and caring people running the organization who have created a supportive and personal environment for people and families suffering from Nephrotic Syndrome.

Ways to make it better...

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

More awareness which is tough for orphan diseases.

More feedback...

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2013

September 5, 2013

more

September 5, 2013

We have friends with a young kid with this syndrome.
We thought we had it tough with a child with heart/chest issues from birth...
The stress,heartache and feeling of uselessness that must come to parents and cargivers of Neph kids... I cannot imagine. This foundation is worthy beyond
words...

Ways to make it better...

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

Wave my magic wand and give them 10 million.

More feedback...

Will you volunteer or donate to this organization?

Definitely

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

Life-changing

When was your last experience with this nonprofit?

2013

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

June 10, 2011

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June 10, 2011

I discovered the Nephcure Foundation through a friend of mine who's son struggles with fsgs, a rare kidney disease. I was amazed at the strides that the Nephcure foundation has made, and believe that with more awareness, they will find the cure to this disease, and prevent the suffering of so many children and their families.

The Nephcure Foundation, www.nephcure.org is an inspirational group, and is deserving of our support. I'd ask people to spread the word and make sure The Nephcure Foundation gets the attention it needs.

The Great!

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

seeing how it's help is needed to fight kidney disease, especially in young children.

Ways to make it better...

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

Try to get more public awareness.

June 10, 2011

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June 10, 2011

I first got involved with the Nephcure Foundation when I heard about my boss and his son's struggles with the rare kidney disease, fsgs. No child should ever have to suffer through such a debilitating disease. Please support the Nephcure Foundation and their fight to find a cure.

The Great!

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

Great strides have been made in research on this rare kidney disease.

Ways to make it better...

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

More publicity to get the word out regarding the organization.

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