I'm sure that most of my fellow FSGS sufferers know about NephCure (and if you don't, WHY NOT???) For those of you that don't know, NephCure is an organization...ok, the ONLY organization, dedicated to finding a cure for my disease, FSGS, and Nephrotic Syndrome. I'm part of the committee for the Indiana Chapter, which is still in it's infancy. NephCure's main mission is to raise money for research into a cure for our disease (which is why I'll be hitting you all up eventually to donate to our walk, which we're going to hold in October...you'll hear more about that later).
NephCure has been a resource for me and for others like me. There is information on our disease in a format that we can share with friends and family, because, let's face it, this disease isn't easy to understand. A lot of us don't look sick, but we are. A lot of us hide it very well...some of us have blogs like this to get out the frustration of living with a rare, chronic disease every single day. There's educational information, research information, lunch and learns, a list of doctors..you name it, you can probably find it there. And if you can't, then you can probably find someone who can.
NephCure has also been awesome for me in that they constantly feature my blog posts on their site and their facebook page. I've had SOOO many people contact me, saying that they saw my blog on NephCure. I love this because the first round I fought with this disease was awful. The only thing I wanted (other than to go into remission) was to be able to find someone like me. That time I didn't know about NephCure, so I feel very blessed that I found it THIS time around. I wanted a community of people to that were there to support each other, and that's what I have now. I can't help anyone physically, but if I can help in any way emotionally, that's good enough for me, and hopefully I have. So I feel like I owe something to NephCure.
That being said, if you have FSGS or Nephrotic Syndrome, will you please take a few minutes to complete the patient survey on their website? The link is http://www.nephcure.org/patient-survey. This survey is a great help to NephCure as they continue to fund research in the field..research for a cure for US! The survey is confidential, and it takes less than 5 minutes to do. Sadly, I didn't even realize it was there until I was on my our NephCure conference a couple of weeks ago, but I did it right away. THEY can't help if WE don't help.
And if you ever want any more information about NephCure or about FSGS or Nephrotic syndrome, go to http://www.nephcure.org/...there's tons of good stuff there!
NephCure has been a resource for me and for others like me. There is information on our disease in a format that we can share with friends and family, because, let's face it, this disease isn't easy to understand. A lot of us don't look sick, but we are. A lot of us hide it very well...some of us have blogs like this to get out the frustration of living with a rare, chronic disease every single day. There's educational information, research information, lunch and learns, a list of doctors..you name it, you can probably find it there. And if you can't, then you can probably find someone who can.
NephCure has also been awesome for me in that they constantly feature my blog posts on their site and their facebook page. I've had SOOO many people contact me, saying that they saw my blog on NephCure. I love this because the first round I fought with this disease was awful. The only thing I wanted (other than to go into remission) was to be able to find someone like me. That time I didn't know about NephCure, so I feel very blessed that I found it THIS time around. I wanted a community of people to that were there to support each other, and that's what I have now. I can't help anyone physically, but if I can help in any way emotionally, that's good enough for me, and hopefully I have. So I feel like I owe something to NephCure.
That being said, if you have FSGS or Nephrotic Syndrome, will you please take a few minutes to complete the patient survey on their website? The link is http://www.nephcure.org/patient-survey. This survey is a great help to NephCure as they continue to fund research in the field..research for a cure for US! The survey is confidential, and it takes less than 5 minutes to do. Sadly, I didn't even realize it was there until I was on my our NephCure conference a couple of weeks ago, but I did it right away. THEY can't help if WE don't help.
And if you ever want any more information about NephCure or about FSGS or Nephrotic syndrome, go to http://www.nephcure.org/...there's tons of good stuff there!
Hooray for Nephcure! I REALLY wish that I had known about them ten years ago when I first got sick - their technology and community-building options have grown SO much!
ReplyDeleteI'm quasi-on-the local team that is trying to get off of the ground. Tried to get off of it because of my other life workloads, but it sounds like the local walk will be about three blocks from my apartment, so it would be lame of me not to participate!
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