The NephCure Foundation is the only organization solely committed to seeking a cause and cure for two potentially devastating kidney conditions, Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). NephCure is made up of patients, their families and friends, researchers, physicians and other healthcare professionals joining forces to create awareness and generate funding for research.
We aim to help science unlock the biological mechanisms that cause these serious conditions and ultimately find a way to cure and prevent them. Until that day, we will:
Provide information, education, support and advocacy for patients and their families
Raise public awareness of Nephrotic Syndrome and FSGS
Work to attract researchers to this field
Conduct public and private fund-raising that will produce substantial research grants
Work with the National Institutes of Health and other agencies to increase funding for research
The NephCure Foundation was established as a non-profit organization in 1999 and is recognized as such by the Internal Revenue Service. Since then, we have testified before Congress four times, adding impetus to the federal government’s plans for the most comprehensive clinical trial program to date into FSGS—a $12 million, five-year project studying the effect of various treatments on 500 FSGS patients.
In other activities, NephCure is conducting several Patient Education Seminars each year and has begun establishing local NephCure chapters across North America. Programs such as these provide patients and families with opportunities to learn of the most recent treatment and research news and take an active role in raising funds and awareness.
Show your support for NephCure and invite your friends to join our cause. The emBRACE a CURE. Saving Kidneys. Saving Lives. wristbands come in NephCure’s signature orange color with our motto inscribed in white.
Proceeds will benefit the NephCure Foundation’s mission: to fund research into Nephrotic Syndrome & FSGS, improve treatment and find a cure. Wear a NephCure wristband in support of a loved one and to promote this important cause.
hi, my name is wendy and i am a 27 year old single mother of three. last feb. i was told of my fsgs after a biopsy... the dr seemed to be little help and told me that there is no real treatment other than the ace anhib. and weight loss...he never explained it to me what i had. i believe i was born with just one kidney though it was brought to my attn. that i may have lost it with out knowing.
Its been a year and in this time, i had to stop the lisinopril due to giant hives and breathing problems. For the most part other than feeling tired easy i have felt pretty fine all year up until now.
ya see, i have no health insurance and havent seen a dr sence my biopsy .
a few weeks ago i swelled out in my belly and ankles.... i looked pregnant. and for the past few months i have had so mch pain in my feet and knees..... yep i have gout and im on a pill for it from the er dr and also a water pill.... top it all off with a uti.
this wed. im driving 4 hours to the only kidney dr that will see me...no one els would due to my lack to pay in full, and up front.
i cant work the way i could because im tired and now my kids live with family because i became homeless with no way to pay basic rent and bills........
i have no answers for how to get help with my disease... please some one let me know if there is a way to get health care to treat my fsgs
i want to live for my children. my biggest fear is leaving them with out a mother
My name is Darleen and my 3 year old son Ryan has had Nephrotic Syndrome and FSGS for over 2 years now and has never responded to any of the treatments we have tried but thankfully he has lost 18 pounds of fluid weight in the past week & 1/2 and for the 1st time in over 8 months hes feeling good enough to get out of bed and do things normal kids do.
For the last 8 months he was pretty much bed ridden he couldent walk for more than 5 mins with out his feet and legs hurting also couldent really sit for to long without being in pain due to the amount of fluid in his back and belly his belly got so big he looked 9 months pregnant.
If anyone ever wants to talk to someone who also has a child with these diseases please feel free to add me or send me a message. Happy Holidays Everyone :)
Im attending to the hospital for my Kidneys since I found out that they are not functioning properly (they found protein (protenuria) and blood in my urine), right now they are running lots of test and they want to do me a kindney biopsy, cause by now they cant figure out what is that i have, so they said that by doing a biopsy they can know for sure whats going on in my kidney. Im new to all this and i get very scare. At least a got a negative (for now) for lupus and my rehumatologist told me to go back to see him in 3 months so thats a relieve. I got everything on Gods hands, cause im pretty scare but i know that i always can count on God, I hope i can be cured, or be help, or at least treated for my condition so i can take good care of my baby boy and my husband for a long time. I was doing some research and by my sympthoms and what they found it looks a lot like: IgAN = IMMUNOGLOBULIN-A NEPHROPATHY = a disorder of the immune system affecting the kidneys and slowly destroyin them in nearly 50% of the cases. I dont know for sure if that is my condition cause i havent had a diagnosis yet but everything points to that. I hope i can have i real diagnosis soon so i can begin with a treatment. Im happy to have a place to share my situation with other people with the same experiences. God bless!! oxoxox Ivy
My name is Corrin, my daughter Cassie was diagnosed with Nephrotic syndrome two years ago, she is now 4. Everyday we keep moving forward no matter how bad the day because I believe one day we will help beat this.
Hi, my 5 year old daughter was diagnose with nephrotic syndrome a year and 5 months ago. Since then its been up and down, we get all the way off steriods and she relapses again, she went from feb till now without a relapse because they put her on cyclosporine. When i looked at this website i noticed lots of people with the donate life graphics. My question is if she never grows out of this, is this something i need to worry about for the future, a new kidney? PLEASE PLEASE someone write me if you have an information.
