NEPHCURE FOUNDATION
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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
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
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