These seemed relevant to our discussion. I sent this to a number of folks at NKFM, DPC and HDC today.
To my friends in the Kidney Community:
Nephcure Foundation hosts a chat on TeamInspire to which I regularly post. Today a received a request from one of their orginating volunteers not to make a request of our members to support other kidney disease organizations. I found this a bit parochial since the forum is to offer support to people like me who are living their life with FSGS.
I of course will comply with any posting guidelines but found this personal request a bit shortsited. Anyways, I thought you all might appreciate my email response to his request.
I know each of you represent an organization with a specific mission and set of goals and objectives. To me as an individual trying to move on with his life despite this little bump in the road, I view you together as the kidney advocacy community. I come from a perspective of organizing rather than dividing. The more voices we get despite how diverse they may be, the louder our requests become and perhaps we will lift above the din and together be heard.
Erich
Hi:
Thanks for the memory jog. I met Henry at Ann Arbor as well.
I appreciate your concerns and all the effort that you and others have put into making the Nephcure Foundation the wonderful group that it is, but I humbly disagree.
While NKF may not support direct research for FSGS they do support basic bench science research that may indeed help those of us inflicted with FSGS. At least I know NFK of Michigan does, I have seen the research summaries.
I am very supportive of Nephcure’s mission and have written Congressmen and met and spoken with Congressmen to support these goals.
I have also widely promoted the Nephcure Foundation on my website and on my NxStage Users Group as well as at Home Dialysis Central and of course by word of mouth. I may not be a founder but I’m a very big supporter of the Nephcure Foundation.
Just about everyone who has FSGS will at some point new a transplanted kidney or will go on dialysis to survive. NKF and NKFM both do a superb job of advocating for the benefit of those of us who live long enough with FSGS to need renal replacement therapy.
It does a disservice to the members of Nephcure to not make them aware of the many good organizations that are available to make their lives better, especially when eventually they will need renal replacement therapy. When there is a cure then things may be different, but we are a long way from a cure for FSGS.
In addition to NKF, Home Dialysis Central, AAKP, Dialysis Patient Citizens are all out there doing good work every day for people like me - a victim of FSGS.
I find my role on this Nephcure forum is to help FSGS patients understand that when they do get to dialysis that it is not the end of the world, rather it is a new lease on life. It is a time to no longer be sad about the ups and downs of FSGS. It is a time embrace life leave FSGS behind and move forward - no regrets. Life is for the living. You mentioned the disease almost took your daughters life. I understand what that feels like, perhaps not my child, but rather for me to no longer be there for my wife and family. But in both of our cases it didn’t. Nepchure will probably not help me or your daughter, but NKF, DPC, AAKP certainly will.
Nepchure is about a dream a cure which I hope some day we will achieve for those yet to be inflicted with FSGS. NKFM and others are for those of us who have to get up every morning without our kidneys and still say, “today will be a glorious day to be alive!”
I find it sometimes difficult to read the posts of others struggling with very strong medicines used to try to achieve remission. Their struggles sometimes makes me feel thankful that I’m already on dialysis and living a very full life.
I have lived on dialysis for seven years and am raising my four year old daughter and my eight year old son. I am a loving husband to the woman I fell in love with in 1981. I intend to be a grandfather on dialysis someday.
FSGS patients need to know that there is a very good life after they get through with their horrible time on medicines and end up losing the use of their kidneys.
I hope you do not appeal to the higher ups on this list serve to remove me. I have received significant positive feedback from our members about my posts. I believe that I am offering a kind of hope that many of our members need. It is different than the hope for a cure, which is important. I am offering them the hope of a joyful life despite finding a cure.
I will continue to ask for help in the variety of forums that I utilize to support the many good kidney organizations out their that can help those of us with the treaded disease of FSGS. It would be very parochial and short sited not to.
Just to let you know I’m sitting back on my LazYBoy eating some sushi in my den as a I write this and dialyze. Life is pretty good.
My number is 5176487764. Feel free to call me any time.
Erich