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Author Topic: NKF SUSPENDS U.S. TRANSPLANT GAMES IN 2012  (Read 6097 times)
okarol
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« on: May 13, 2011, 01:52:29 PM »

Announcement from the National Kidney Foundation

NKF SUSPENDS U.S. TRANSPLANT GAMES IN 2012

Will Re-Examine Model in Light of Economic Conditions, Programs to Encourage Organ Donation Continue.

The National Kidney Foundation will not be hosting the U.S. Transplant Games in 2012.
“For 20 years,” says NKF CEO John Davis, “the NKF U.S. Transplant Games have educated the public about the life-saving power of organ donation and dramatically demonstrated that those with transplants can and do lead normal and active lives. But the Games represent a multi-million dollar expense for the foundation,” he explains, “that also requires a significant commitment of staff resources.”
“Now,” Davis says, “when most Americans view transplantation as almost routine surgery that restores life, we will re-examine the format and financial structure of the Games, to achieve maximum impact and to ensure sustainability going forward.   As always, we will work with a range of constituents and supporters to accomplish this. ”
Since 1990, the biennial Olympic-style event has served to showcase the success of transplantation, promote health and fitness for transplant recipients and recognize and honor donor families and living donors.
“We want to thank the thousands of transplant athletes, living donors, donor families, medical professionals, supportive family members and volunteers who have worked so hard to make the NKF U.S. Transplant Games so successful over the years,” says NKF Senior Vice President for Programs Gigi Politoski.
“Special thanks to dozens of corporate sponsors for their support of the Games and our athletes. We could not have conducted the U.S. Transplant Games for
20 years without their generosity and enthusiasm and look forward to their continuing participation and partnership as we explore ways to restructure the Games.”
NKF will continue to direct its resources to helping ensure that every American who needs a transplant receives one. NKF’s far-reaching END THE WAIT! initiative offers a comprehensive action plan to address the shortage of available kidneys for transplant and to end the wait for those on the list by instituting best practices across the country and eliminating barriers to organ donation.
In addition to END THE WAIT!, NKF will continue to offer print and on-line publications and other resources for transplant recipients, donor families and living donors. A full range of educational materials can be found on the NKF website – www.kidney.org. Perspective living donors, transplant recipients, and donor families can also access the NKF Cares patient information help line.
For complete information about donation and transplantation please visit www.kidney.org/transplantation/. To participate in NKF’s on-going programs and services, click here. http://www.kidney.org/about/membership.cfm
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
jbeany
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Cattitude

« Reply #1 on: May 13, 2011, 06:04:20 PM »

Due to financial issues, the light at the end of the tunnel will be out until further notice.....
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

Zach
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« Reply #2 on: May 13, 2011, 06:35:03 PM »

National Kidney Foundation
Officers, Directors, Trustees, and Key Employees for Fiscal Year Ending June 30, 2009

Name                                Title                                          Compensation
John Davis                     Chief Executive Officer                      $488,425
Joseph Vassalotti            Chief Medical Officer                        $327,159
Dolph Chianchiano          Senior VP Health Policy & Research    $289,226
Gisele Politoski               Senior VP Programs                          $272,687
Kerry Willis                     Senior VP Scientific Activities             $238,581
Stephen Bajardi              Chief Operating Officer                      $231,371
Joan Shepard Lusting       Senior VP Field Services                    $230,130
JoAnn Vecchione             Senior VP Organizational Resources   $216,793
Thomas Martin                Chief Financial Officer                       $158,997

Hey Buddy, can you spare a dime?

8)
« Last Edit: May 13, 2011, 06:40:11 PM by Zach » Logged

Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
noahvale
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« Reply #3 on: May 13, 2011, 07:17:12 PM »

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« Last Edit: September 16, 2015, 05:41:57 AM by noahvale » Logged
okarol
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« Reply #4 on: May 14, 2011, 12:46:25 AM »

Hahahah that's funny since Zach also lives in NYC!

The Transplant Games was paid for by patients selling candy here, for example, in Los Angeles. You were required to fund raise to be a participant. You also paid your own travel expenses and hotel bill.

I asked a NKF employee about how many kidney patients they have on as paid staff at their NY office. Answer = None (although a few affiliates have a couple.)

Their annual revenue is about $45 million (as of 2009) but very little of that money ever goes directly to helping patients.  Some of it is for education and prevention, which is dandy, but why not help some of the 300,000 patients who are already on dialysis?

I find it upsetting that the patients who go on Kidney Walks, with family and friends who donate large amounts of money in support of their loved ones; pushing wheelchairs around a stadium while pulling together to make a difference - little do most realize that the majority of their efforts are to pay salaries for NKF officers.

And the "End the Wait" campaign. How does that help the folks who do not qualify for a transplant, or those who choose to remain on dialysis - what about them?

Don't get me started. Ooops. Too late.  :oops;

« Last Edit: May 14, 2011, 12:47:57 AM by okarol » Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
greg10
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« Reply #5 on: May 14, 2011, 04:51:06 AM »

Go to Charity Navigator to compare these two charities, AKF vs NKF


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Newbie caretaker, so I may not know what I am talking about :)
Caretaker for my elderly father who has his first and current graft in March, 2010.
Previously in-center hemodialysis in national chain, now doing NxStage home dialysis training.
End of September 2010: after twelve days of training, we were asked to start dialyzing on our own at home, reluctantly, we agreed.
If you are on HD, did you know that Rapid fluid removal (UF = ultrafiltration) during dialysis is associated with cardiovascular morbidity?  http://ihatedialysis.com/forum/index.php?topic=20596
We follow a modified version: UF limit = (weight in kg)  *  10 ml/kg/hr * (130 - age)/100

How do you know you are getting sufficient hemodialysis?  Know your HDP!  Scribner, B. H. and D. G. Oreopoulos (2002). "The Hemodialysis Product (HDP): A Better Index of Dialysis Adequacy than Kt/V." Dialysis & Transplantation 31(1).   http://www.therenalnetwork.org/qi/resources/HDP.pdf
noahvale
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« Reply #6 on: May 14, 2011, 09:36:40 AM »

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« Last Edit: September 16, 2015, 05:41:19 AM by noahvale » Logged
okarol
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« Reply #7 on: May 14, 2011, 10:35:38 AM »

They don't HAVE to hire kidney patients. But I truly believe that people in the trenches have a different perspective than employees who don't. Why not have a goal of providing work programs to those you serve?
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
noahvale
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« Reply #8 on: May 14, 2011, 10:42:33 AM »

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« Last Edit: September 16, 2015, 05:42:34 AM by noahvale » Logged
okarol
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« Reply #9 on: May 14, 2011, 11:57:27 AM »

That's the problem. I have written for 10 years. I get the same bolier plate responses.

I do not agree about that being in the trenches is too emotional. The most successful drug and rehab programs are effective because they have counselors who have been there.  I have seen the Renal Support Network helping patients, one patient helping another. It works.

The NKF has the audience but they drop the ball when it comes to meeting the needs of patients. They had a support forum similar to IHD and it was one of the first places I found other people who were sharing strength and experiences. It had thousands of posts. They lost it all during an upgrade. It's never been the same. I know many patients who were really let down by NKF's lack of interest in rebuilding the site. Perhaps a patient or family member or advocate could have done a better job.

Vocational rehab? I'd love to see where you find this. Jenna is 25 and we have searched for help. Please direct me to resources because the Ticket to Work Program here is all they've got.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
lola
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I can fly!!!

« Reply #10 on: May 14, 2011, 01:42:57 PM »

We did a walk ONCE for NKF but then when I called to see if there was any type of help for Otto's dental work that needed to be done they said no???? So no more "kidney" walk for us, AKF is paying for Otto's medicare premium, they will continue to pay for it as long as he needs it :pray; Now we walk for HOPEKIDS, and I learned to REALLY check out  where my money go's when we raise it ;)
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noahvale
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« Reply #11 on: May 14, 2011, 05:51:17 PM »

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okarol
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« Reply #12 on: May 14, 2011, 07:04:15 PM »

Quote
Have you heard of the Able-Disabled Advocacy organization?  It works with the CA Department of Rehabilitation through its Projects With Industry employment placement program for those with disabilities.   Here's its web site:  http://www.able2work.org/about/mission.pwr

Thanks, I will check it out. However, patients with transplants are not usually considered disabled anymore.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
noahvale
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« Reply #13 on: May 14, 2011, 07:22:11 PM »

^^
« Last Edit: September 16, 2015, 05:43:23 AM by noahvale » Logged
wj13us
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Paul's ride 2011

« Reply #14 on: May 14, 2011, 07:48:06 PM »

488K for a CEO of a company with revenue of 45MM and senior VPs in the 200 to 300K range and the CFO at 158K!  That's cheap.  Really that is cheap for a NYC based company.  Supervisors in sanitation department in NYC make more than most of those VPs.

Bill
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greg10
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« Reply #15 on: May 15, 2011, 05:07:10 AM »

488K for a CEO of a company with revenue of 45MM and senior VPs in the 200 to 300K range and the CFO at 158K!  That's cheap.  Really that is cheap for a NYC based company.  Supervisors in sanitation department in NYC make more than most of those VPs.

Bill
American Kidney Fund. Operations in Atlanta, Chicago, New York, HQ in Rockville, Maryland. Revenue of $173 million.
LaVarne Burton   President and CEO   $359,786    0.21% (of expense)

Mission
American Kidney Fund (AKF) was founded in 1971, to help a single individual with kidney failure pay for dialysis. Forty years later, AKF has become the leading source of direct financial aid to chronic kidney disease patients across the nation. The American Kidney Fund leads the nation in providing charitable assistance to dialysis patients who need help with the costs associated with treating kidney failure. Last year, 101,000 people-1 out of every 4 dialysis patients in the United States-received assistance from the American Kidney Fund for health insurance premiums and other treatment-related expenses. Millions of people nationwide benefit annually from the American Kidney Fund's efforts to fight kidney disease through public awareness campaigns, free health screenings, health education materials and courses, online outreach, and toll-free health information HelpLine (866-300-2900).
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Newbie caretaker, so I may not know what I am talking about :)
Caretaker for my elderly father who has his first and current graft in March, 2010.
Previously in-center hemodialysis in national chain, now doing NxStage home dialysis training.
End of September 2010: after twelve days of training, we were asked to start dialyzing on our own at home, reluctantly, we agreed.
If you are on HD, did you know that Rapid fluid removal (UF = ultrafiltration) during dialysis is associated with cardiovascular morbidity?  http://ihatedialysis.com/forum/index.php?topic=20596
We follow a modified version: UF limit = (weight in kg)  *  10 ml/kg/hr * (130 - age)/100

How do you know you are getting sufficient hemodialysis?  Know your HDP!  Scribner, B. H. and D. G. Oreopoulos (2002). "The Hemodialysis Product (HDP): A Better Index of Dialysis Adequacy than Kt/V." Dialysis & Transplantation 31(1).   http://www.therenalnetwork.org/qi/resources/HDP.pdf
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