Hi Folks
Can someone break down the $$$ all these folks get? I just want to see where and how much $$$ thses folks get and are the people they say they are helping getting the bang for the bucks?
I want to talk on this ,but I liked to get some idea on the $$$ end of things first.
Thanks
Bob O"Brien
Hi Folks
I did check out the tax return of the company. but will the site you posted tell how much $$ the people who are the policy makers and the rank and file get payed or do they not get payed?
Bob obrien
They can’t get paid enough for what they do.
There is no conspiracy theory here. Just hard working folks working on our behalf. Just like our friends at Home Dialysis Central.
They could all make a helluva a lot more selling widgets. Peace, Erich
Bob:
Have you tried calling them and asking them for their annual reports? Erich
[COLOR=blue][FONT=Arial]Hi Erich,[/COLOR][/FONT]
[COLOR=blue][FONT=Arial][/COLOR][/FONT]
[COLOR=blue][FONT=Arial] With regard to your request for general information about compensation of staff I’ve prepared information for you, noted below. I did consult with my boss, Dan Carney , our CEO, in order to answer your questions in the best manner possible. I’m glad you contacted me about this since it is an area of frequent misunderstanding among the public. As you go forward in responding to concerns, I’m sure you will be happy to know that the NKF of Michigan has received the highest possible rating (4 Stars) by Charity Navigator, America’s largest “charity watchdog” organization. What this means is that their evaluation of our agency found that we do an exceptional job of managing the money we receive and that the ratio of program to administrative/fund raising costs is exceptional. Less than 25% of America ’s charities earn this designation. You may recall that NKF of Michigan also received the coveted Crain’s Detroit Business “Best Managed Nonprofit Award” a few years ago. I wanted you to have this information as you respond to the concerns you have heard about kidney advocacy groups. I don’t feel like I have enough information about other kidney groups to comment about them but I think our results and verification of them by outside watchdog organizations speak volumes about our agency.[/COLOR][/FONT]
[COLOR=blue][FONT=Arial][/COLOR][/FONT]
[COLOR=blue][FONT=Arial]With regard to the pay of other kidney organizations…… I can’t speak to the appropriateness of other kidney groups but I can tell you that our compensation standards are in keeping with industry standards for all nonprofits of our size. With regard to leadership compensation, our board of directors wished to insure that compensation for our leaders was appropriate but also recognized their role in making the NKF of Michigan the best Affiliate of the National Kidney Foundation and a 4 Star Charity. Most of all, it wanted to insure that the agency continues to provide more programs and services to more people than any other NKF Affiliate. To that end, our board hired the American Society of Employers, an independent agency, to benchmark compensation and recommend appropriate ranges. This has been completed and supports our compensation policies. [/COLOR][/FONT]
[COLOR=blue][FONT=Arial][/COLOR][/FONT]
[COLOR=blue][FONT=Arial]NKF of Michigan professional staff generally must have a Bachelor’s Degree or equivalent but many have advanced degrees. A high number have Master’s Degrees and one a Ph.D. The NKF of Michigan has about 70 full and part time staff. The average annual pay is about $36,500 per employee. In the coming year we expect about 17 of our staff to make $45,000 or more, including six managers and two leaders. The rest will be under that amount. NKF of Michigan is lean with regard to management as there are just six managers and two executive staff. Most agencies our size have 3-4 executives. Of course, these folks don’t just manage. Because we are lean they also must implement programs. Our average manager earns about $64,500. Our top leader’s compensation has been benchmarked against nonprofit’s of our size and scope and has been proven to be appropriate for an agency of our accomplishment. [/COLOR][/FONT]
[COLOR=blue][FONT=Arial][/COLOR][/FONT]
[COLOR=blue][FONT=Arial]Hopefully, you can use this information when you are questioned in order to answer any questions that people have about the NKF of Michigan. I would really stress the point that the organization has been named as a four star charity, which is the highest an organization can receive, from a trusted group that monitors all charities. I have attached our letter in case that would be helpful. [/COLOR][/FONT]
[COLOR=blue][FONT=Arial][/COLOR][/FONT]
[COLOR=blue][FONT=Arial]Thanks again for allowing me an opportunity to respond to the concerns you are hearing. Take care, Linda[/COLOR][/FONT]
[COLOR=blue][FONT=Arial][/COLOR][/FONT]
[COLOR=blue][FONT=Arial][/COLOR][/FONT]
[FONT=‘Arial Rounded MT Bold’]Linda Smith-Wheelock, ACSW, MBA[/FONT]
Chief Operating Officer
National Kidney Foundation of Michigan
Hello Folks
The reason I ask is what do all these groups do? I’ve never been contacted by them, I’ve email them on issues only to get no reply or read the rights and responsibility. The same from the network people, and my state dept of health.
Understanding the process of dialysis and what type of dialysis is an easy to understand thing. It all the real legal questions. There is no real form or board that can answer real legal questions. And I don’t have the cash to hire a lawyer.
thanks
Bob O’Brien
Eric,
Could you write another letter and ask for a breakdown on what NKF’s services are? My experience with this kidney assoc. and others is, a person answers the phone who knows nothing about kidney disease/dialysis and the most they do is offer to send some booklets written on about a 6th grade level. I know they put on seminars from time to time which most kidney patients are not able to afford to go to as it involves travel, hotel, food expenses, arrangements for dialysis, so that’s out. Looks like they hold ritzy balls for the professionals. And is it the NKF that offers kidney screenings? My relative went to one. He was supposed to get his results back in a specifed amount of time, but it ended up taking about 3x longer than promised while he waited on edge each day. So, to have all these employees and the healthy salaries, what exactly do they do? Oh, I forgot to mention, I do get frequent letters from them asking me to send donations, but unfortunately they go right into the shredder- for some odd reason I don’t trust organizations that ask for $$$ without any kind of real explanation or proof of why they are a worthy cause.
In full disclosure, in addition to consulting with MEI and my state kidney program coordinating CKD education programs, since 2005 I’ve been a National Kidney Foundation employee. Initially I was hired to develop all the educational materials and answer patient and professional questions about Medicare Part D (see http://www.kidneydrugcoverage.org). For the last couple of years, I’ve been assigned to work with CMS (Medicare) to help their staff transition to new regulations (published 4/15/08). This has included planning for trainings for state surveyors who visit dialysis clinics to monitor the care provided and need to understand what the new regulations when they become effective 10/14/08.
Different kidney organizations do free screenings. I believe NKF was the first to do this. The American Kidney Fund does screenings too. I believe DaVita has recently started doing screenings as well. I don’t know why your relative’s screening results were held up. I suspect he could call the organization to ask why it took so long to get the results if they were promised sooner.
So far as ritzy balls…those are fund raisers for the various organizations. Businesses are encouraged to buy a table for their employees and professionals like me get invitations to attend. The cost is typically $100 or more per person to cover the expenses of the event and to (hopefully) raise money for the cause that organization supports.
Organizations that do professional educational seminars charge a fee for professionals to attend them. The fee covers the cost of the room, materials, speakers’ travel and lodging. If a seminar makes money, it goes into the funds that provide the organization’s programs and services.
So far as patient meetings are concerned, the American Association of Kidney Patients and the PKD Foundation are two organizations that offer annual patient meetings. There may be a registration fee and cost for housing. If you can afford to go (or if it’s nearby), I’ve heard wonderful things about these meetings.
When you call an organization, rather than trying to find out information from the person answering the phone, ask to speak to someone who can tell you about the programs and services they offer. The person answering the phone may know basic information, but like a receptionist in any business, the person who runs the programs knows the most about them. Staff at the various kidney organizations, like people anywhere, have different levels of knowledge about kidney disease. Some have worked in dialysis or transplant. Many have not and have had to learn about kidney disease just like patients have. The staff of organizations should be able to point you to resources to help you learn more about kidney disease and treatment. However, your best resource for information about your condition and what to do about it is most likely your doctor or a member of your healthcare team. If you don’t trust what your doctor says, you always have an option to get a second opinion.
It’s not easy to write brochures that meet the educational needs of everyone. If you haven’t seen Kidney School (www.kidneyschool.org), it has received lots of patient and staff compliments. Health literacy specialists recommend writing materials at the 5th-8th grade level to reach those patients and family members who may not read at the level that those on this website read or who may be intimidated by medical jargon. Newspapers are written at a low reading level too.
So far as what kidney organizations do, check out their websites. You may be surprised by all the programs and services they offer. Plus they often provide funding for research to discover new ways to prevent or treat kidney disease.
– AAKP - http://www.aakp.org
– American Kidney Fund - http://www.kidneyfund.org
– National Kidney Foundation - http://www.kidney.org (see offices under Who We Are)
– PKD Foundation - http://www.pkdcure.org
Here’s a directory of kidney organizations that includes the ones above.
http://kidney.niddk.nih.gov/kudiseases/pubs/kuorg/index.htm
I’ve been a volunteer with my NKF office for nearly 30 years. My NKF office:
– provides volunteers and support for a nearby kid’s camp
– does a program called KidPower to educate kids about healthy eating and exercise to help them avoid kidney problems
– provides kidney screenings to the community, especially targeting high risk groups
– offers financial assistance and nutritional supplements to qualifying patients
– has an annual awards dinner for patients and their families with a short educational program and give-aways
– provides a scholarship for patients to attend training or post-secondary school
– provides free brochures on kidney topics
– has a speaker’s bureau with patient and professional speakers who talk to groups about organ donation and other kidney topics
– supports transplant athletes (not just kidney) for the Transplant Games every two years
I’m sure I’ve forgotten some things my NKF office does. Again, to find out what yours does, talk with the program director.
And if you really want to know what an organization does, volunteer with any of these organizations.
So far as solicitations for donations, if you want to know how any nonprofit organization spends its money, look at the financial statements that are usually posted on that organization’s website or look at this website that the Better Business Bureau established which shows if an organization meets its criteria for accountability.
http://www.give.org
Thank you Beth, well said.
I’ve been a volunteer for NKF of Michigan for seven years. I have personally raised close to $50,000 for this organization because I believe in the services they provide. Remember for any non profit organization, they exist to fill a void for public benefit.
In order to due business as a 501c3 or other not for profit tax designation, the fedeal government has to approve the organization. The organization has to file annually to maintain that status.
I continue to raise money for NKFM because they give kids an dialysis a chance to go to summer camp. They fund research for Nephrology Fellows just starting out. They educate state and ferderal legislators to maintain funding for kidney disease education and to support transplantion and to improve the delivery of dialysis. They provide disease screenings. They bring neprhologists and other kidney professionals together to so that they can improve the services that they deliver to us. The list is longer than this.
There really isn’t much mystry here. Just followw the steps that Beth has provided.
Kidney disease robbed me of completing my Ph.D. and my work as an environmental consultant. Volunteering to help others not have to suffer through kidney disease or to improve their life if they have kidney disease helps to give my life a greater purpose.
Pick one and get involved. I think you will be amazed at how empowering it is.
Good luck, Erich
Erich, it’s great that you get so much value out of helping the NKF of MI, which is a terrific organization. But I’d still love to see you get back and finish that PhD and get back to environmental consulting (Lord knows we need more help with the environment!) I know your kids are still little, but kidney disease can only “rob” you of your dreams if you let it. Now that you feel better with daily HD, I hope you’ll think about recapturing your own potential. (And still volunteering :-))
This is the first time that I’ve ever read a more expansive run down of services kidney associations offer. It seems to me a failing that the ppl answering their phones don’t convey more of this to the public or don’t suggest a brochure at least that covers the services.
Nevertheless, I feel the kidney associations also fail in two essential areas. Although they provide education to a degree, I think they fall very short when it comes to being a more effective arm for education- their educational programs are too simplistic and/or sparse. And most of all, patients look to kidney associations for advocacy and they get none. They might be told to call their ESRD network. But many who have gone that route found the Network to turn them into the clinics instead of advocating for them! The kidney associations are not the patients’ advocate, for if they were, we would not have the deplorable conditions we have in dialysis clinics across the nation. So, IMO they do too little where it really counts. If the day comes that they truly become the patients’ ADVOCATE, that is when I will volunteer and support them with my $$$.
Dori,
It is a great misconception that just because someone has graduated to home txs and is “feeling better” that they are on par with a normally functioning person (whatever that is). As kidney patients on dialysis, our lives have been so disrupted on many levels. I’m one of those patients who is feeling better, but feeling better does not mean normal energy and vitality. It means better than the “hell” we previously went through.
A big part of the suffering I went through was scrambling everyday for literally years to educate myself on kidney disease/dialysis, because education was almost non-existent in the clinics I was in. I had to study and study and study some more to get to a point where I could understand my illness and the treatment for it. I couldn’t even think of important things like exercise as it took nearly every waking moment of my days to search for accurate dialysis education.
The good news is, I’m almost there and can see the light of day again. Because I have gotten through the education maze at long last, and because I am feeling better with better dialysis, I am finally at the point where I am daily incorporating activities back into my life then lend themselves to balance. This in itself is a tremendous achievement when one has been devastated by a chronic illness. Chronic illness also affects everyone so differently. Some can work or pursue an education while on barely adequate 3x dialysis, while others can not pursue college or outside work while on the most superior treatments.
It is possible to improve on many levels, because that’s what I’m doing now as I add various healthy activities into my daily regime. But until this point I couldn’t of done this, because educating myself took me so long. That’s why I work to see more educational programs. I think the better the education, the sooner one with kidney disease can come back to oneself. Some of the education of late has been a real improvement. My quest is to see great strides made with respect to dialysis education so patients will not have to struggle as long as I did to regain their health and lives. Recovered health will mean different things to different patients and that’s ok. Earning a living is not necessarily the measure of health and success. It is a tremendous blessing to feel recovered on as many levels as possible and there is much one can contribute to ones family and society with or without a pay check.
Hi Jane,
Certainly it can take time to reclaim a life that’s gone off-track due to treatment for one (or more) chronic disease(s). But my yardstick is the folks who were lucky enough to make it past the “life and death” committees in the 1960s, long before EPO was available to treat anemia. There were folks (and I know some of them*) who kept working because they had to work. Even now, I know people who work 2 jobs–with DHHD–to support their families. It’s not necessary to get back to 100% to return to a cherished goal (like a PhD or work in a field you love). It might be that 60% is enough. And it’s not that folks aren’t “worth something” unless they work. But it pains me to see people give up on their dreams, and one sign of “rehabilitation” is getting those back–on whatever timetable works.
*You can meet one, too, at our next Webinar on June 23rd! More to come soon about that… 
Hi Folks
I would have loved to have a DR or nurse or a group, call me or talk to me like the the person I am, one who has been dealing with a chronic health issues since I was born. Over the yrs I came to think of my Dr as the person who could answer my questions and if I was asked to conduct myself in a way that the reason would be told to me in a way that I could understand and say to my self “Hey this makes sense”"I understand that those in the medical world are here to try and help. So I should my best to help them in my care.
But all of us must agree that at times the things don’t always go the way there are meant to, I had no Dr that talked to me like a 48 yr man who has spent his life talking to Drs, nurses etc. Instead it was do as you’r told and just shut up. How can one prove the words said in any setting in a state that prevents a person from recording the talk that happens between DR , nurse , soc. worker and person who is left in there care? In my state I have to let the person who I’m talking to if I plan to record them that I’m going to do this, I’m sure the talk between us would have gone in another way. The network here was of no use, there idea of answering my questions was "“just play ball” The pts groups never called and in answering my question was read the right charts. What good is a chart that tells a person he or she has rights but don’t use them ,if you do we(dialysis company) will use there right and toss you out of the center. When you a new person in this you have no idea of what is or isn’t legal or right.
I would have loved to have a center in my first trip into dialysis like the one I found 2plus yrs down the road. Thanks to me and the fact that I did not give in and keep looking ( and this site and all the wonderful people who answer my questions and help me pick the type of dialysis to pick that was and still is the best for me).
But in my life real issues can not be fixed just by talking. It would be nice if the my network really work the way I think it should or a pt group would have set up a one on one talk between myself and someone either on dialysis who understood the do’s and don’t or someone who understood the same.
My wife came down with breast cancer and I was in shock at the network of people who called and offer there time to do anything to help , other women in our area called and offer to talk and be there for her is she wanted to talk or just cry. My mom came down with ALZ, and the same thing happened. I had people who would stop what they might be doing if I was having issues in dealing with my mom and were just there for me.
You know that dialysis has been around now for a while and the NKF has been around for 50 plus yrs. They have chapters in my area, did they offer me any help at all, no just the booklets and papers that are on what to eat or not etc.
Dialysis people just like others in other areas of life here in the USA from time to time need real legal help, but for the avg. person can not afford legal help. We are trap in no man’s land. We get money where we can get by ,but toss a major issue not just dialysis into our lives and it can set us back yrs.
I’m glad that cases like my or Jane’s seem to be (I hope rare) but our cases do come up not for something we done just due to a break down. I’m happy for the folks that have units that have given them the want to help others in there area. If I lived close to my new unit I would do the same but the real world isn’t like that ,just going once a month takes a big bit out of my monthly money. Just the once a month takes a whole day of mostly travel.
bob O’Brien
Some healthcare professionals are uncomfortable with patients being active participants in their care just like there are some patients who have said they want professionals to tell them what to do and to not know any more than they have to. The key is to match the patient who is interested in active participation with the provider who enjoys having a patient that wants to learn more. Hopefully as more younger people come along (professionals and patients) everyone will be more comfortable with patients who actively participate in their care and what to know all they can to do that successfully.
I’m not trying to make excuses, but the reason why dialysis patients don’t get calls from NKF and other organizations is because without patients’ permission dialysis clinics cannot release the names of their patients with anyone. Your clinic (and any clinic) can have patients who are interested in talking with another patient to sign a release. This would allow the clinic to give a patient’s name to a mentor who could then call or meet with him/her. Within every clinic there are patients who are doing well and I bet some would love to serve as mentors for patients who are just starting dialysis. I’d love to see more of them educated about kidney disease and all treatment options, coping with kidney disease, how to work with diverse patients and respect different cultures, and to know when to refer to the doctor, nurse, dietitian or social worker.
The NKF of Michigan developed a Peer-to-Peer program many years ago. National NKF developed a binder based on Michigan’s program (PEERS Program) that a local NKF office could use to set up a program like it. Many times local NKF offices do not take on national programs like this because they have limited staff and it takes a huge effort to get something like this started. It also requires collaboration with dialysis clinics that have staff who feel overworked doing their regular jobs. However, I suspect that once a program like this got off the ground it would help everyone – staff and patients alike. If Michigan still has this program, maybe Erich can tell us more about how it’s working there.
For home patients, it may be even more important to have peer-to-peer education/support groups since patients at home don’t spend as much time in dialysis clinic waiting rooms. I’ve known of dialysis clinics that had monthly meetings with potluck lunches for home patients. Perhaps you could ask your social worker and/or home training nurse if he/she could survey home patients for interest in an education/support meeting or interest in being listed in a directory with their treatment type and contact info so others could call or email them. For a directory, it would be important to regularly confirm contact info.
MEI through the Home Dialysis Central message boards would like to connect people so they can learn more and gain the support they need to live as fully and happily as possible.
Dori:
I know I may have come across a little negative, but my dreams have changed. While I wanted that Phd and commuted hours after working a 9-10 hour day in pursuit, it is no longer a dream. I live in a Univerisity town, so I’m constantly bumping into professors who are parents to my son’s friends, but my mind is no longer there.
My dream now is to write more and to publish more - mostly fiction and creative nonfiction.
My difficulty is that I cherish my time with my son and daughter and find it difficult to find the necessary time to be a productive writer. I can’t seem to write while I’m dialyzing - my focus just isn’t there. I think generally I’m recouperating from keeping up with everyone.
Also, I do take great pride in trying to keep the household running somewhat smoothly so my wife can concentrate on running her law firm. This doesn’t always work out and has taken a great deal of effort on my end. I’m very proud of what she is capable of, but did think I was also going to be doing such things too. It doesn’t mean I dream of it, just am reminded that it once was a dream. There is a distinction.
Also, when trying to raise money I do sometimes rely a little on the use of pitty to help fill the coffers. I have to admit it.
Finally, sometimes having the broad shoulders and taking what comes your way tires you out a little and you just want to shout, “this isn’t what I had in mind for my life.”
And that is why it is nice to have people like you Dori to say, “well then make a change!”
Peace, Erich
[quote=Dori Schatell;16110]Hi Jane,
Certainly it can take time to reclaim a life that’s gone off-track due to treatment for one (or more) chronic disease(s). But my yardstick is the folks who were lucky enough to make it past the “life and death” committees in the 1960s, long before EPO was available to treat anemia. There were folks (and I know some of them*) who kept working because they had to work. Even now, I know people who work 2 jobs–with DHHD–to support their families. It’s not necessary to get back to 100% to return to a cherished goal (like a PhD or work in a field you love). It might be that 60% is enough. And it’s not that folks aren’t “worth something” unless they work. But it pains me to see people give up on their dreams, and one sign of “rehabilitation” is getting those back–on whatever timetable works.
*You can meet one, too, at our next Webinar on June 23rd! More to come soon about that… ;-)[/quote]
Hi Folks
You are and you do made excuses and have in one way or other since I started on this site. But that’s fine ,everyone has and is weclome to the outlook they hold and what to they think.
But if my Dr or nurse or soc.worker can not tell one healthcare consumer from another as to being able to handle the truth of his or her illness or the Dr etc is not strong or adult to let the person know what might be or not be laying down the road. Then ,get away from me, I in no way did not let my first team know I wanted to be an active team member.
The cancer folks asked my wife right off if she was willing to get emails or phones calls from people in our area that have been there and are still are dealing with there condition. With my Mom and her ALZ. her first Dr who had been her Dr for at least 5 yrs. refuse to help, oh sure he keep telling me that he would have information for me , but after 8 months I had to find a new Dr ,her own was just blowing smoke up my you what…
One of the biggest problems we have in this country is that all of us to one degree are good at making excuses . Yes I do myself will make excuses if I feel the people I’m dealing with in my eye seem as if they are unable or will not be able to handle open talk. Like I said my new team , I have come to know want my input,due to the fact ,that I do ask a ton of questions.
thanks
Bob OBrien
[QUOTE=Beth Witten MSW ACSW;16116]Some healthcare professionals are uncomfortable with patients being active participants in their care just like there are some patients who have said they want professionals to tell them what to do and to not know any more than they have to. The key is to match the patient who is interested in active participation with the provider who enjoys having a patient that wants to learn more. Hopefully as more younger people come along (professionals and patients) everyone will be more comfortable with patients who actively participate in their care and what to know all they can to do that successfully.
I’m not trying to make excuses, but the reason why dialysis patients don’t get calls from NKF and other organizations is because without patients’ permission dialysis clinics cannot release the names of their patients with anyone. Your clinic (and any clinic) can have patients who are interested in talking with another patient to sign a release. This would allow the clinic to give a patient’s name to a mentor who could then call or meet with him/her. Within every clinic there are patients who are doing well and I bet some would love to serve as mentors for patients who are just starting dialysis. I’d love to see more of them educated about kidney disease and all treatment options, coping with kidney disease, how to work with diverse patients and respect different cultures, and to know when to refer to the doctor, nurse, dietitian or social worker.
The NKF of Michigan developed a Peer-to-Peer program many years ago. National NKF developed a binder based on Michigan’s program (PEERS Program) that a local NKF office could use to set up a program like it. Many times local NKF offices do not take on national programs like this because they have limited staff and it takes a huge effort to get something like this started. It also requires collaboration with dialysis clinics that have staff who feel overworked doing their regular jobs. However, I suspect that once a program like this got off the ground it would help everyone – staff and patients alike. If Michigan still has this program, maybe Erich can tell us more about how it’s working there.
For home patients, it may be even more important to have peer-to-peer education/support groups since patients at home don’t spend as much time in dialysis clinic waiting rooms. I’ve known of dialysis clinics that had monthly meetings with potluck lunches for home patients. Perhaps you could ask your social worker and/or home training nurse if he/she could survey home patients for interest in an education/support meeting or interest in being listed in a directory with their treatment type and contact info so others could call or email them. For a directory, it would be important to regularly confirm contact info.
MEI through the Home Dialysis Central message boards would like to connect people so they can learn more and gain the support they need to live as fully and happily as possible.[/QUOTE]
Bobeleanor, I’ve noticed a real tendency in the “renal community” to act as if kidney failure is the only chronic disease that ever happens (and yet each time it does happen, it’s as if it never happened before. Very strange. No education, usually, and very little support).
There is, surprisingly, zero effort made to learn from what works in other diseases–like cancer. So, it’s actually VERY helpful to have the contrast of your wife’s experience vs. yours. You’d be amazed at how little we hear about that, even though cross-fertilization can be hugely helpful for getting good ideas spread around.
That said, the key to all of that support your wife received in cancer wasn’t so much organizations stepping up, as other people with cancer who recognized the need and stepped up to create organizations that others could work through.
In the renal community, the only organizations that I know of that were started by patients for patients are AAKP & RSN. The National Kidney Foundation is more of a doctor’s organization, though it has groups for nurses, techs, dietitians, social workers, and a patient-family council. DPC formed in the last couple of years with an advocacy agenda that is intended to help patients.
With cancer, the folks with the energy who are able to reach out and help others aren’t the ones who are currently in the middle of chemo or radiation, though–it’s the ones who’ve made it through to the other side. If you look at AAKP and RSN, their leadership is not on dialysis–they’ve had transplants. So, it’s important to keep in mind that part of the reason you didn’t see the kind of support your wife did is that 92% of U.S. folks with kidney disease are doing in-center HD and feel too crappy to get involved much with helping others (or at least don’t have the energy to found and build organizations to do that).
That’s not an excuse, Bobeleanor–it’s the same reality that makes it so hard for any dialysis centers to get support groups going. My hope is that we can raise some of the energy we need to really help other folks with ESRD by getting more people dialyzing at home. Like Erich with his NKF volunteering, these folks have the energy to get out there and help others.
Dori:
Just to let you know, I raised approximately $36,000 between 2001-2006 when I was on either in-center traditional hemodialysis or PD.
I do feel better on home hemo - but it does take a significant amount of time - but worth it!
Cheers! Erich