Raising Money for Kidney Education and Research

In one of Bill Peckham’s recent post he shared with us that he has donated a siginicant amount of money/stock shares to develop a Kidney Research Center in Washington. Huge Kudos go to Bill for all he is doing to make life for us patients better!

I bet others of you are making commitments of time and money to help research cures and to help prevent or delay kidney disease. Many of you may which to stay anonymous in your philanthropy but for those of you would like to share your story you can post to this thread.

Below is my story about why I raise money for the National Kidney Foundation of Michigan. I hope it will inspire you.

Why I Raise Money for the National Kidney Foundation of Michigan

http://www.firstgiving.com/riverdudes07

Sure, the National Kidney Foundation of Michigan is a noble organization which helps thousands of people in Michigan who are suffering from kidney disease and helps to educate our citizens on how they can prevent or delay its onset. That is my altruistic reason – it is a good organization and it helps people. I have selfish reasons too. These reasons tie directly to my well being and how I feel about myself.

Prior to the loss of the use of my kidneys I was a husband to my high school sweetheart, father of my one year old son, a mover and shaker at a consulting engineering firm, and a student launching into my doctoral dissertation. I thrived on juggling these responsibility with a cavalier just in time attitude. Just in time in the way that I almost always got to my engagements, “just in time.” Of course, from my wife’s perspective she would say I was rarely on time, but besides this little time interpretation dispute, I felt like I had life by the horns. In fact, I had been commuting up to 240 miles every other day in order to take classes and work full time and had recently reduced that to twenty miles a day by moving to East Lansing. Things were looking good.

Then one day I noticed my shoes were a little snug. Four months later I was incredibly sick, on dialysis and waiting to receive a new kidney from my wife so that I could get back on track with my life. Hold the boat - that was where I was incredibly naive. Over the next six years I had more surgeries and medical procedures than I imagined a body would survive. For me there was no, “thanks for the transplant and off to work I go.” Things got very bad. They would get a little better, but then they would get quite bad again.

But lo and behold, here I am at my desk in my den hooked-up to a hemodialysis machine writing about why I raise money for kidney research and education. I have been living without the use of kidneys for six years of which the last year has been relatively stable.

Each of those six years I organized a team to help raise money for the National Kidney Foundation Michigan. Organizing had been the cornerstone of my career and without my career it became a life ring to my perceived identity. My fund raising team gives me a greater purpose than survival. It allows me to go beyond my daily pain and limitations. It allows me to go past my family’s needs. It allows me to give something beneficial to society. It allows me to do good work.

There has been times when the Walk is getting near and I just didn’t think I had the capacity to pull my team together. Once, I thought to myself that we had done a good job over the past couple of years by raising $10,000 and that it would be alright to skip a year. One day when I was thinking this my son, who was four years old at the time, found a box in the closet. When he opened it he saw a small plastic trophy. He asked me why we had a trophy and I told him because we raised some money for the National Kidney Foundation. He asked, “were we the champions?” I hesitated in answering not having thought about it in those terms. I sure didn’t feel like a champion. But then it dawned on me that other than caring for my son, which granted in the big scheme of things is of Herculean importance, in my victim’s perspective of life I wasn’t amounting to much of a role model. To my son that tiny trophy signified that we were winners. Being a winner in my son’s eyes is very important to me. I finally responded to him, “yes Jacob, we were the champions.” After that, I found the energy to field our team.

Organizing my team has also provided me with a way to stay connected with people who are important to me. One of the most difficult aspects of being severely ill is that you are removed from the social networks that provide meaning to your life – work, school, church, extended family, friends. While friends, coworkers, fellow parishioners do not intentionally forget you, it is just that they are continuing with their lives and the networks you once belonged to and overtime your absence is no longer strongly felt. With my team at least once a year I can reconnect with people who have been a part of my life. My solicitation and my updates on my team’s accomplishments allows me to remind people that I’m still here – that I’m alive. It provides me an opportunity to let them know that I am thinking of them and wishing that they are well.

So why do I raise money for the National Kidney Foundation of Michigan? I do it because it is a top notch organization doing good work and, perhaps just a bit more importantly, because it adds meaning to my life, allows me to stay connected with people who are important to me, and makes me a champion in my children’s eyes.

http://www.firstgiving.com/riverdudes07

So far The Riverdudes Team has raised $30,000.

I find it peculiar that no one has responded to this post. Why conclusions can I draw:

  1. You are very private about your philanthropic endeavors.
  2. You are too consumed with your treatment that you don’t have time to help prevent kidney disease or support research for cures and more effective means of treatment.
  3. It never occurred to you to help prevent others from having to live the life that you are forced to live.
  4. You are bitter and you wish everyone else to know the pain of dialysis.

I thought it would be a nice post for us to share what we are doing to be part of the solution. Don’t you get a little tired of hearing about what it is like to be part of the problem? I sure do.

I know, I know - then stop reading the posts. Can’t do it. Got to spread some sunshine where I can. “He’s got the whole world in his hands, he’s got the whole world in his hands. . .”

Have a simply beautiful day! Erich

[COLOR=darkred]NxStage Pole was I believed posted one day longer than Raising funds for Research. As of this post it has recieved 58 views where raising funds has only received 21 views. What does that tell us about the users of this bulletin service? What is your interpretation?[/COLOR]

I for one have a issue going on with my eye that makes reading a computer screen unpleasant. I want to post about Plugger’s Bill in CO too but I can hardly stand to read/write more than I have to for work, so until this clears up you’ll just have to take my word for it - I’m with you my brothers.

I’m sorry that I haven’t congratulated you on your success at raising money for NKF of Michigan. I know some of the people that work there and believe that the Michigan NKF affiliate is one of the best in the U.S. so far as developing innovative programs and putting its money where its mouth is by hiring people to work for them who have kidney disease and/or kidney failure. I appreciate all that you did to help them do the good work that they do.

BTW, one of the reasons why I didn’t post right away is that with my aging eyes it’s harder to read script than to read san serif text like the bulletin board defaults to. Not much of an excuse, but true.

[quote=Beth Witten MSW ACSW;12281]I’m sorry that I haven’t congratulated you on your success at raising money for NKF of Michigan. I know some of the people that work there and believe that the Michigan NKF affiliate is one of the best in the U.S. so far as developing innovative programs and putting its money where its mouth is by hiring people to work for them who have kidney disease and/or kidney failure. I appreciate all that you did to help them do the good work that they do.

BTW, one of the reasons why I didn’t post right away is that with my aging eyes it’s harder to read script than to read san serif text like the bulletin board defaults to. Not much of an excuse, but true.[/quote]

Thanks, Beth. It never occurred to me that people would find the font hard to read. I’ll keep that in mind from now on.

I wasn’t looking for kudos. I was curious to see what others are doing. Thats it. Just wondered what others were doing. Perhaps also stimulate fellow patients to see how liberating it can be to help others since most of our time is generally focused on ourselves.

I’m afraid my post has generally failed at both.

I did get an encouraging email to my blog from a new friend and fellow NxStager who I met on Gus’ network.

Erich

I think some patients on dialysis do participate in walks and other events to help raise money for kidney (and other) causes. Some, like you and Bill, have done way more than that. Could people with kidney disease and professionals working in dialysis and transplant settings do more? You bet your bippy they could, but they need to be informed about the need so they want to do more. I think organizations that do good work, like MEI, NKF, NKC, AAKP, AKF, etc. need to constantly keep reminding people of what they do. If it’s not right in front of you, it’s easy to forget. And some organizations like the American Heart Association and the American Cancer Society and the Susan G. Komen Breast Cancer Foundation have way more money to get their message out. As they say, it takes money to make money.

MEI relies on sponsorships and donations to keep our efforts to promote home dialysis going too. Suggestions?