National Kidney Foundation

[paris]

AlohaBeth had a call from the NC  Director of the National Kidney Foundation.  They are closing the offices in N.C.  There will be no Kidney Walk this year.   This is just incredibly sad for us. The Kidney Walk has been such a big part of our family for the past few years.  We've always done well with the fundraising and have enjoyed every part of our participation.  But, what about patients that need the NKF assistance, information and help?  They told Beth that more money was going out for fundraising than was coming in, so they can't justify keeping the offices open.  We are really disappointed that we won't have that connection anymore. 

[Lillupie]

i cant believe this. I thought NC had a good economy. WOW how sad. I am sad to hear this.

Lisa

[lmunchkin]

A husband  who's wife goes to the clinic came in to my place of employment and told me that they were having a kidney walk at Cool Springs Mall in Brentwood, Tenn. this weekend or next.  I do not know if that is connected to NKF.  I did it a couple years ago, but have not been due to having to work on Saturdays.

Man I think this is awful!   Those fundraisers can help a lot of people!  So Sad to hear this!!!!!

lmunchkin     

[Bill Peckham]

http://www.bbb.org/charity-reviews/national/health/national-kidney-foundation-in-new-york-ny-41


If you take a look at the Better Business Bureau summary of their 2009 financials you can see a rather giant problem - a 17 million dollar deficit 40 million income, 57 million expenses. Letting expenses over shoot revenue by over 40% is not something any charity can sustain. My understanding is that 2010 was not much better.


The transplant games have been canceled too http://www.post-gazette.com/pg/11139/1147649-84-0.stm?cmpid=healthscience.xml


I haven't heard the inside story but from the outside there is a governance question. Why didn't the Board see what was coming?

[jbeany]

Wow, who's been running the thing?  Someone from a federal government budget committee?

[okarol]

This is a recent email from NKF:
Sent: Tue, Jul 19, 2011 5:36 pm
Subject: RE: NKF announcing the cancelation of this year's Nephrology Update

Dear Friend of the NKF,
 
It is with regret that we are announcing the cancelation of this year's Nephrology Update
Professional Education Conference, which had been scheduled for September 10-11th in Atlanta,
GA.
 
As you may know, The National Kidney Foundation (NKF) has been undergoing a period of
financial challenges and internal changes. Like other non-profit organizations, NKF has faced
financial pressure over the past few years due, in part, to a nationwide reduction in charitable
giving caused by the down turn in the economy.
 
NKF has also been particularly affected by other factors, such as the tax law change regarding car donations and the more stringent guidelines around contributions from the pharmaceutical industry.
 
In order to ensure the continued success of the Foundation, the NKF has taken preventative
measures to ensure our financial stability moving forward.
 
Cancelling Nephrology Update was a difficult decision, made in part by limited financial support
from outside organizations here in Georgia. We are sincerely sorry for any inconvenience this
may have caused you or your colleagues.
 
We are also postponing the Patient and Family Conference until the early spring of 2012. We
hope this will give the NKF and our partner's ample time to secure additional sponsors to ensure
this event is successful.
 
We thank you for your continued support of the National Kidney Foundation.
..................

[okarol]

Recent news (some people feel the leadership failed the NKF):
NKF restructures while CEO, Senior Vice President for Health Policy and Research retire
8/4/2011

The National Kidney Foundation announced today that CEO John Davis and Senior Vice President for Health Policy and Research Dolph Chianchiano have retired from their positions.

The retirement announcements came amid financial hardships, other staff reductions, and a restructuring of the kidney foundation's regional offices.

"To maximize limited resources, the National Kidney Foundation is focusing on only those programs that impact the health of the greatest number of people," read an NKF release message to its members. "For this reason, the national board of directors made a decision that the organization at large can no longer provide medical alert jewelry, emergency grants, or nutritional supplements for dialysis patients. "

Davis began his career with the NKF as the Executive Director of NKF of Iowa in 1971 and in 1982, he was named Executive Director of the entire national organization.

Chianchiano joined the foundation in 1979 and has been the principal architect of all NKF's public policy campaigns, the kidney foundation said.
 .................

[Rerun]

So, how many patients got ANY help......  This is just sick.  I'll run it for free!  You just get too many people on board who have to make a six digit income and this is what you get.    They better not be leaving with retirement packages!

       

[paris]

NC's economy is hurting like the rest of the country.  So, many jobs have gone overseas.  Banks merging has also created job loses.

Both my girls work for non-profits.  Aloha Beth is with the Methodist Children's Home and has a lot of contact with donors to MCH.  And Melissa is Executive Director of the eastern reagion for the Muscula Dystropy Association.  Their donations have been way down.  People don't have the extra money to donate. When someone donates, it is a much smaller donation.  One of her fund raisers usually brings in $100,000.  Now they are lucky to get $50.000.   

Beth was asked to be on the state NKF board last year, so she is really disappointed to lose that connection.  And she is friends with the state Director.  She will miss all of the people and all her volunteer work.

[Bill Peckham]

So, how many patients got ANY help......  This is just sick.  I'll run it for free!  You just get too many people on board who have to make a six digit income and this is what you get.    They better not be leaving with retirement packages!

It isn't clear to me how this could happen but one guess would be that they were slow to react to a fall in revenue. It would have been painful to cancel events on short notice but fast action in 2008 would have allowed them to retrench with some of their assets intact.

The board of directors have to accept blame. It can be hard for a national board to accomplish their governance duties, in order to have meetings people have to fly in, really parachute in ... meaning 24/7 they have high powered jobs and are not immersed in the strategic planning and financial oversight that marks high functioning governance. Good intentions don't get you where you need to be, hard, focused work moves you towards the organization's goals.

Right now there is not a national foundation directly supporting people with severe kidney disease. The AKF has a very particular nitch, and they are doing very well, they managed to make over 8 million dollars, while NKF took their nose dive. But the AKF has a narrow mission laundering industry money to game the insurance system. We still need an organization dedicated to direct support of those that are ill. Medical alert jewelry, emergency grants, and nutritional supplements for dialysis patients are things people are willing to donate money to support their provision, it is sad that it is the personal, for the dialyzor support, that is the first to be jettisoned. Not even to mention the solutions and support a more nimble and creative organization could have developed.

[Chris]

Paris, that ssame responce was said regarding the transplant plant games also bout fundraising.Hopefully they have a regional ofice that will serve the state or tri-state area. Thing is to me, atleast here is that their fund raising events usually where expensive to do. Golf Outingd, expensive dinners and auctions to name a couple. Common people could not afford to do these things or donate large sums of money. They should think about doing something more people could get involved with to where they could afford to donate money.

[Meinuk]

Paris,

It is pretty obvious that I have not been a fan of the NKF for the past few years.  But even though there isn't a national corporation doing the organizing and collecting of money, I think that it is time to take all of the good will and energy that your family has and make it grass roots.

If you want to do a walk, pick your charity.  I am sure that your transplant center has a patient fund, and I wish that ALL dialysis centers had a patient fund.  We need to stop collecting money to fund the lobbyists and start collecting money to fund the people in need.

As a community, we still need people to volunteer and we still need all of the financial support that we can get. Even a Family & Friend's Pot Luck Picnic with donations and a walk around the Park for Nina and Nana would be appreciated.  We now need to think about helping our neighbor as this economy has yet to rebound.  Grass roots is where it is at. And not fake grass roots like DPC (Davita Dialysis Patient Citizens or the multi million dollar NKF)

I'm not sad that the National Transplant Kidney Foundation finally came clean, and is officially saying what they have been doing.  They are not helping patients directly, and they haven't been for a while.  Now it is out there. People know.  Finally. They are making research grants, and providing education.  Both good causes.  But in my opinion, this is a time when research and education have to take a back seat to people being able to afford to get to dialysis or pay for their insurance.

If you or anyone wants to give, I suggest that you contact your local non-profits.  Your hospitals that have a dialysis unit or transplant unit - any non-profit that you come across that treats our peers. 

The charities in "our" name, haven't been advocating for us.  They have used us as their poster children to advance their own agenda.  In some cases, that works, and in others, we are simply feeding a parasite economy of paid professionals - with no connection to kidney disease at all, who say that they are putting the patient first. People can retort that we need a voice at the table.  But I just want to say that all the people at the Federal Trough are doing is yelling.  I say, let them yell, and let's take care of ourselves.

Now is the time to be our brother's keeper.

I am a BIG fan of the grass roots Patient Awards and Recognition Day that a group of Manhattan people with CKD-5 hold every year.  They solicit nominations and money from the community, speak to their representatives, and hold a day of education and a party.  There are certificates for people who have thrived on dialysis, and an award for a particularly helpful staff member.

I wish that every state or county could have these.  We need to acknowledge the struggle.  And I am a fan of awards.  Here in NY State, State and Federal Representatives/Senators get involved by sending "Certificates" for the people being awarded.  It is a great event to bring your family to, and it celebrates SURVIVAL.

If anyone out there wants to award the Susan "Goofynina" Trevino Award for Compassion while Living on Dialysis, I'll donate $100.00 right now.

Now is the time to "Think Global, but Act Local".  The NKF had too much of a National Agenda and too many political aspirations to ever do that. I don't miss them.

Love,

Anna

N.B.: I have to add that I saw an amazing thing this past July.  A good childhood friend of mine is dying from cancer.  She won't make it through the summer.  Her employer went out of business.  No insurance.  Because she has worked all of her life and had some assets, they needed to be sold off before the State of Maine would help her.  SSDI denied her (as they do most the first time that they apply) She will be dead before she gets her first check.  (her sister will get it to pay for the funeral expenses).  But my home town heard of this, set up a benefit dinner and auction, and raised enough cash (I was there to see the $20's rolling in) to see her through the few short months that she has to live.

Her employer couldn't help her, the State wouldn't help her, but her friends and neighbors have made her last few months financially worry free.  It is events like this that restore my faith.

We can help each other, and we don't need the NKF.

[paris]

Meinuk, I love your posts.  You are great at expressing things.     Since Beth was "in" with the state people with NKF, she knew a few months ago that our current director was losing her job.  She spent more on the venue and cotton candy machines and popcorn makers than the event took in!   Melissa (MDA) gets her venues donated, all food, water, etc is donated, so the money raised is not used to put on the event.

My son rides in a 100 bike ride that supports the UNC transplant center (where I had my transplant).  So we will throw our support to them, since we have a stong tie.    I think what is hurting so much is giving up our "team walking for Nana and Nina", wearing our tiaras and boas for Goofynina, all the personal things the Walk has meant to our family.   Life moves on.   The grandkids can still have their bake sale and we will still raise money.   What a mess some non-profits are!  My daughter has told me some outragious stories about the MDA telethons.  Did you know that there really aren't thousands of people calling in? Most of the calls are staffers calling the numbers. They had a lengthly meeting about what to do during the call in period.    I am just too innocent - I believe people want to do good!    I do believe in helping those at home first.   We were in Amish country recently and there was a flyer posted. A farmer was in need of a kidney. Being Amish, he had no insurance, etc. And they are proud people and pay their own way.  So they were holding auctions, bake sales, etc to help this gentleman get his kidney.   That is a fund raiser I can get behind!

[Meinuk]

Paris   

I used to be such an idealist. I thought that Johnny Carson was simply talking to us.  I thought that our Presidents were too.  Then I met a professional speechwriter.  It made me feel dirty.

Innocence lost is a terrible thing.  But maintaining a love for humanity in the face of this corruption, well, that is GRACE.  Both you and Beth have that in spades.

Susie taught me a lot.  She gave me love, hope and compassion.  Money can't buy that.  When she died, she and her husband were facing foreclosure. I used to talk to her about dealing with creditors calls.  Susie gave me something that money could never buy, and had I realized just how much she and her husband were struggling, I would have done more than just sending her binders and rewriting her resume.

I say have a family dinner, and wear that boa and tiara one day a year.  Celebrate your life and Susie's life.  It isn't always about money.  Susie taught me to try to not think about what others would say, and cast my inhibitions aside.  Where I was repressed and self conscious, she was full of life and saying "Take me as I am".

I was a member of IHD for maybe three months, and she PM'd me and asked for my phone number.  Then she asked "Is that too soon to ask?" I was mildly freaked out, but I said "No", and I gave her my number.  And in those first few months of me being on dialysis, she was there for me.  She was my cheerleader when I had none, and she cared.

I was kind of freaked out on that first trip to Vegas.  I didn't really know anyone, and I wasn't really part of any "clique".  I was intimidated.  But Susie offered me a shot, and you and Beth came to visit me in my room. I was all alone and dealing with dialysis.  You will never know how much that meant to me.

The NKF gave me booklets when I was a child to bring to school and tell my friends about kidney disease.  Booklets are all well and good, but friends, even ones that you have almost no contact with or those that you simply cross paths with a few times in your lifetime.  Friends are the true gift of life. The rest is just fund raising.

And friendship is free.

We all give what we can.  In Susie's case,she didn't donate money or walk.  But her gift was priceless.

[okarol]

  This is what I love about this forum.