NEPHCURE FOUNDATION
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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!!!
The Great!
I've personally experienced the results of this organization in...
I have been personally a part of this organization shortly after my daughter was diagnosed over 9 years ago
Ways to make it better...
If I had to make changes to this organization, I would...
Make sure that all the dedicated people that work there are given a round of applause every day when they finish another day searching for a cure!
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.
The Great!
I've personally experienced the results of this organization in...
the nephcure foundation is currently funding 30 research projects around the glode. we are also helping to fund a registry for fsgs and nephrotic syndrome patients.
Ways to make it better...
If I had to make changes to this organization, I would...
help this foundation get the word out to the public and the world about the great work that this foundation does and help them get the word out about these two terrible kidney destroying diseases called fsgs and nephrotic syndrome. these are two kidney diseases that are grwoing in leaps and bounds and have no cure. right now we have an identity crisis and i am going to help change that.
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.
The Great!
I've personally experienced the results of this organization in...
being able to relay information between our families/friends so we can all be up to date.
Ways to make it better...
If I had to make changes to this organization, I would...
none
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 Great!
I've personally experienced the results of this organization in...
being an active volunteer for our Indiana NephCure charter.
Ways to make it better...
If I had to make changes to this organization, I would...
figure out a way to make it bigger :)
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.
The Great!
I've personally experienced the results of this organization in...
The eye's of the children and families affected by Nephrotic Syndrome and FSGS.
Ways to make it better...
If I had to make changes to this organization, I would...
I'm working on trying to find "deep pocket" donors who will give consistently.
More feedback...
What I've enjoyed the most about my experience with this nonprofit is...
They are easy to work with, dedicated to the cause and the informational sessions they hold with medical teams and families.
The kinds of staff and volunteers that I met were...
I have met Miriam Long who is wonderful to work with and relentless in fundraising efforts.
If this organization had 10 million bucks, it could...
Find a Cure for Nephrotic Syndrome and FSGS.
Ways to make it better...
My experience has been wonderful. If we could find some bigger backers for the Massachusetts Chapter, that would be wonderful!
In my opinion, the biggest challenges facing this organization are...
Development and dissemination of true marketing materials. NephCure needs a "promo-pack."
One thing I'd also say is that...
NephCure is doing a great job!!!
When was your last experience with this nonprofit?
2009