NEPHCURE FOUNDATION
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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.
1 person found this review helpful
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 13, 2011
My 8 year old son was discovered to have FSGS about two years ago. With no where else to turn and with very little hope, my wife and I discovered NephCure. We emailed NephCure asking for information about FSGS and any assistance they could provide. Almost immediately they responded to us. They were caring, concerned and provided so much support to my wife and I.
Additionally, they asked us if we wanted to be put in touch with other parents dealing with FSGS. That night, we received a call from a Board member of NephCure who has a child dealing with FSGS. He spent well over 2 hours on the phone with us providing both information and overall support. He as well as the members of NephCure always ask how my son is doing and if we need anything - they truly care.
In summary, NephCure is a truly amazing organization with the most dedicated people working for it. They always go the extra mile and will not give up until there is a cure for FSGS.
The Great!
I've personally experienced the results of this organization in...
Helped my family in some many ways - exceptional organization.
Ways to make it better...
If I had to make changes to this organization, I would...
Continue to grow and get the message out about the wonderful things NephCure does.
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.
June 10, 2011
I am president of NCF (and a parent of a child with FSGS), so am biased- but I will say that the volunteers and staff of this group are among the most dedicated I have ever encountered--This is not a nice disease, and treatments and knowledge of it are wanting----This organization and its devoted group will never give up until we have a solution and treatment for FSGS and neprotic syndrome.
The Great!
I've personally experienced the results of this organization in...
In my dealings with researchers, I have found a strongly motivated group of concerned individuals for these diseases.
Ways to make it better...
If I had to make changes to this organization, I would...
increase the size of the board and recruit more volunteers
June 10, 2011
I have had four kidney transplants. After each one the Nephcure foundation was there to assist me and support me. The people at Nephcure are truly motivated to finding a cure. They are also the most dedicated and caring people that I have ever met. Without Nephcure there would be limited research in to these diseases (fsgs and nephrotic syndrome). Nephcure gives me hope that one day I will live a "normal" life. This keeps me going.
The Great!
I've personally experienced the results of this organization in...
Support and information on treatments for FSGS
Ways to make it better...
If I had to make changes to this organization, I would...
None
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
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
Ponder the words of Sir Winston Churchill:"Never have so many owed so much to so few." These word adequately describe the unwavering and selfless actions of all those involved with the Nephcure Foundation. More than just raising money and awareness, this Foundation is determined to couple those who are afflicted with this life changing disease with those Health Care professionals who can help. I feel honored to be around such people.
The Great!
I've personally experienced the results of this organization in...
Texas Holde'em Fundraisers and have dealt personally with their Board members
Ways to make it better...
If I had to make changes to this organization, I would...
The old adage "if it ain't broke,don't fix it" is more apropos than thinking that this charitable organization needs to be changed.
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.