I have been affiliated with Nephcure for almost 10 years now. I am diagnosed with one of the diseases that they work with and have been fortunate to stay off of dialysis the whole time. I am glad they provide services and information to patients and their families that need it and am particularly proud of the work they are doing with the Nephcure Kidney Network, which is helping to find clinical trials for patients and providing researchers with data to create appropriate clinical trials. That's why I'm on the steering committee for the network.
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.
Fantastic resource! We found this organization while frantically searching the internet the day our daughter was diagnosed with Nephrotic Syndrome over four years ago. It has been a source of hope for us over the years. The Nephcure Foundation is funding vital research projects that are needed to help find a cause and cure for Nephrotic Syndrome. My parents have friends whose son was also affected by this disease and my daughter is being treated exactly how their son was treated 40 years ago, more research is needed for more treatment options!! Thank you Nephcure Foundation for your fundraising and research efforts, as well as your support of patients and families. We will continue to support Nephcure and we are proud to be associated with this organization. Thank you Nephcure Foundation!
Excellent organization. They provide patient education, fundraisers for kidney disease research and help connect patients for support.
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.
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!
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.
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!
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.
Nephcure is an organization that supports people that have no where else to go with information and help. Having a child with a disease that there is no cure for is a hard thing to swallow for a parent. Nephcure was there for me and my family every step of the way. Nephcure is an organization that saves families and lives.
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.
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
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!!!
My experience with Nephcure has been largely confusing and frustrating. When, at a recent charity gala, they bestowed an award to notoriously sketchy pharmaceutical company Questcor, a company that manufactures a drug that has little to no efficacy in treating kidney disease (something i found out from a quick google search that was also corroborated by my own nephrologist) and charges exorbitant amounts of money for said drug, I was confused. I wrote to Nephcure on Facebook stating as much, inquiring as to why they would choose to honor this company (a company that is notorious for paying large sums of money to doctors for promotion of their drug, despite very little clinical evidence of its usefulness), and I received no response, which was telling. Not only did they not respond to my message, but they also deleted links to articles about the questionable integrity of Questcor that I had posted in the comments section under their link about the gala. Patients deserve to be informed about these things, and if Nephcure truly had the best interests of kidney disease patients in mind, why would they block access to this information? Why would they promote a company and a drug that has done almost nothing for kidney disease sufferers? Nephcure strikes me as the kind of "non profit" that is in the pocket of big pharma: not as interested in a cure as it is in its own self promotion, which is a shame, because people suffering from FSGS have no other organization to turn to that deals specifically with this disease.
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.
Thank you for expressing your opinion. It seems as though you have had a negative experience with our Foundation. We invite you to contact us directly so that we may address your underlying concerns. Please contact us at 1.866.NEPHCURE. We would like to respond to your comments openly as well. It is incorrect to say that we are a “coping” organization. NephCure is, as our mission indicates, the only organization committed exclusively to supporting research seeking improved treatments and the cause and cure for the kidney disease FSGS and Nephrotic Syndrome. We have never wavered from our mission. It’s important to clarify that NephCure does not perform research, we support it. Early on, NephCure supported basic science related to FSGS and Nephrotic Syndrome. In recent years, we have begun supporting clinical and translational research as well. Our support of and participation in NEPTUNE speaks to that point – see link below. Additionally, we would like to direct you to the recent announcement regarding our participation with the Patient-Centered Outcomes Research Institute (PCORI). Through this new patient-centered health network, we will expand our NephCure Kidney Network patient registry, a true research accelerator and the first of its kind – see link below. Finally, NephCure is a nonprofit organization. Our independently-audited financial statements are freely available on our website, NephCure.org. Again, please contact us so that we may address your underlying concerns. - NEPTUNE: http://nephcure.org/nephcure-funded-research - PCORI: http://nephcure.org/news-640k-grant-nephcure-kidney-network - Financial information: http://nephcure.org/financial-information
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.
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.
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.
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.
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.
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.
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.
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.
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
"Never have so many owed so much to so few"- Winston Churchill. As a supporter of the Nephcure Foundation this quote come to mind when I think about the support available to those afflicted with this devastating disease. The undying support available coupled with the progress made to understand this disease, gives hope to those afflicted and will create a path to the cure.
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.
I have been involved with Nephcure for about 7 or 8 years ever since my closest friend in the world, Michael Levine's son Matthew was diagnosed with FSGS/Nephrotic Syndrome. I have seen how this charity has been growing in recognition and effectiveness every year. The charity has improved its fundraising and events and organization dramatically. The money raised GOES TO THE FINDING OF A CURE, not to frivolous costs. Nephcure is changing lives by giving children a future, who once had none. With all the dedication that the volunteers and friends and family members put into Nephcure, it is truly a model for other charitable organizations. I cannot say enough about how great Nephcure is and how much it is giving hope to those who once had none.
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.
NephCure is working for a CURE!
In October 2011, we traveled to Washington DC to attend advocacy day with The NephCure Foundation On Capitol Hill, we met with Senators and congressmen, and shared what it is like to live with kidney disease. The NephCure Foundation brought families together to educate elected officials, and to ask for funding to find a cure.
NephCure is making a difference!
Because of NephCure we connected with other families dealing with kidney disease.
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!!!
my 2 year old beautiful nephew was struck by lightning one spring day when his parents were told that matthew has FSGS, a rare kidney disease. there is no none cause or cure for this incidious disease that strikes without prejudice. the family was devastated as we learned about FSGS. the light in the forest that helped cope with the emotional and physical trauma of matthew's condition was Nephcure, an organization of parents, siblings, aunts, uncles and grandparents that would not throw in the towel. they have fought extremely hard to get the word out about kidney diseases like FSGS. and have worked extremely hard to raise money for research. there is no negative to Nephcure, no hidden agenda, no national telethon, no corporate culture, just folks trying to save their own.
I am a nurse who has worked in the field of Nephrology (kidney disease) for 31 years. About 7 years ago I found Nephcure anf I also found HOPE for families living with Nephrotic syndrome and FSGS, These 2 kidney diseases have no cure and many of the current treatments do not work. Nephcure is the most grassroots organization I have ever had the honor to work with and although I currently sit on their board my most important connection is as a nurse sharing Nephcure with my patients and families, I look forward to the day when a cure is found and Nephcure can become part of history, today I am grateful they wont give up!
This is an amazing foundation that provides much needed support to families that are battling this difficult disease.
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.
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...
4 1/2 years ago we were devastated by a diagnosis of FSGS for our 16 year old daughter. Several months later after joining Nephcure we attended our first Lunch and Learn in Montreal. It was a phenomenal experience. Since then we have supported Nephcure and continue to follow their growth, development and expansion in Canada.
Nephcure has been so helpful as well as informative following my son's diagnosis with FSGS last year. I am thankful to all those involved in his foundation who work together in hopes of finding better treatment options.
In 2007, my then 4 year old son was diagnosed with Nephroticy Syndrome. Neither we nor any of our friends or family had heard of the disease prior to my son's diagnosis. This left us feeling overwhelmed, scared, and alone. We searched online and were extremely lucky to find the Nephcure Foundation. The Nephcure Foundation has been a great experience for us as an educational tool as well as just receiving general support. While its presence has continued to expand, its executive director and staff remain easily accessible and ready to help people and families suffering from NS on a more personal level. The Nephcure Foundation has been integral in expanding awareness of NS and FSGS and works tirelessly to find a cause and cure. We will be forever grateful to the Nephcure Foundation.
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.
Grandson diagnosed with NS in March 2011. Never heard of this kidney disease and the NephCure Foundation has been a great source of knowledge and support from other patients. Our Nephrologist encouraged us to get in touch with this non-profit group. We have participated in the NephCure Walk in our area and have raised funds to help find a cure and better treatments for these children and adults with NS and FSGS.
I was diagnosed with FSGS in 2004. I am now 32 yrs old and it's been 1 1/2 yrs since my kidney transplant. I did't know anyone who had this disease and so I was looking for a place to get answers and support. I was dealing with a lot all on my own, not knowing where to turn. I looked online for some support groups and Nephcure just fell into my lap. It was the best thing that happened to me! I was able to get much needed support from other people my age and even doctors. Nephcure has been a huge part of my life and I only hope that one day their hard work will pay off and we find a cure for this horrible disease. Thank you Nephcure for all that you have done. I only hope I can maybe return the favor and help others just like me.
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.
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.
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.
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.
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.
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.
My 12 year daughter has battled an incurable kidney disease called FSGS since was 2; we recently lost our battle and her kidneys to this kidney destroying illness! There is simply no excuse WHY our children have to go through this devastating horrific illness.........Nephcure is the ONLY organization that is fighting every second of every day to find a cure! This group of dedicated unrelenting people, will not stop until we wipe this illness from the face of the earth. Anyone that is part of this organization is truly a special person. To put a wife (kidney donor) and 12 year old daughter in side by side operating rooms to undergo a 4-5 hour major surgery is simply unacceptable!!!
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.
My granddaughter has FSGS....this is the only nonprofit that is specifically trying to find a cure. Their newsletter with the latest updates on new medicines and research is so helpful. They do great work and help to keep us all connected.
I was so relieved to find NephCure. I've been able to get more involved in finding a cure for the disease that has so drastically affected my life. I've been able to find other people just like me, which I thought was completely impossible when I was first diagnosed. NephCure provides all of us with valuable patient resources, as well as a way to get the word out.
The NephCure Foundation has done more for bringing awareness of Nephrotic Syndrome and FSGS to the public eye than any other organization we have worked with.