| LDO Home | General | Kidney | Liver | Marrow | Experiences | Buddies | Hall of Fame | Calendar | Contact Us |

Author Topic: NKF dropped LKD Listserv on 5/24/13 -This was a Helpful Site  (Read 3981 times)

0 Members and 1 Guest are viewing this topic.

Offline stevewin@windstream.net

  • Top 50 poster!
  • ***
  • Posts: 37
Numerous Living Kidney Donors used this Listserv to gain information, express their thoughts ,feelings. To communicate on emotional issues. Also try to find a way to start a registry for LKD's [nationally] in the US and to try to help potential kidney donors.. Their were numerous points and great information shared and discussed. I hope we can find another listserv, site that has the same type of community spirit where one could discuss, express and learn. NKF did not have any time after their email that they were stopping the Listserv for people that used this Listserv to communicate and exchange email addresses, it was stopped after the end of that email. They were told in the same email that this site we could use.
 This listserv[the passion, personnel involvement, compassion and information sharing] was unique and will be missed.   Steve

Offline Fr Pat

  • Top 10 Poster!
  • *****
  • Posts: 983
Re: NKF dropped LKD Listserv on 5/24/13 -This was a Helpful Site
« Reply #1 on: May 24, 2013, 07:19:37 PM »
Dear Steve,
     Hi. Just to note that the National Kidney Foundation has had serious budget problems which has caused them to shift resources. For that reason they dropped their sponsorship of the "Transplant Games" (fortunately the Games have been picked up by an independent group) and they likewise did that very suddenly, including the fast cut-off of related listservs. I think that perhaps their lawyers may have been concerned. If a listerv is "sponsored" by the Kidney Foundation and somebody posts BAD medical advice on it that someone gets hurt by following, the Foundation might get sued since the advice was given under their "sponsorship". The Foundation also cancelled their message boards for living donors, dialysis patients, recipients, etc. I believe that the Foundation wants to be fuly responsable and in control of anything distributed under their supervision. At least that is my guess.
    best wishes,
       Fr. Pat

Offline Karol

  • Advocate for patients and organ donors
  • Administrator
  • Top 10 Poster!
  • *****
  • Posts: 660
  • Jenna after a day at Disneyland
    • Kidney For Jenna
Re: NKF dropped LKD Listserv on 5/24/13 -This was a Helpful Site
« Reply #2 on: May 28, 2013, 01:58:22 PM »
Hi Steve,
Many of the listserve members are already LDO members too. Hopefully the ones who weren't will find their way here. Jennifer at NKF just posted another email this morning:

 Good morning,
 
We've received questions from several members of NKF's previous LIVEDONOR email listserv, asking how they can continue to communicate with each other.
 
We wanted to let you know that you can visit www.livingdonorsonline.org to find other people who were members of the email listserv. Just go to the Message Board (and then the Living Donation Forum) to find one another, share emails if you wish, and continue to support each other. The direct link is https://livingdonorsonline.org/ldosmf/index.php?board=3.0 and you'll see a message there about the NKF listserv.
 
Best wishes,
Jennifer Martin
National Kidney Foundation
Daughter Jenna is 31 years old and was on dialysis.
7/17 She received a kidney from a living donor.
Please email us: kidney4jenna@gmail.com
Facebook for Jenna: https://www.facebook.com/WantedKidneyDonor
~ We are forever grateful to her 1st donor Patrice, who gave her 7 years of health and freedom

 

Copyright © International Association of Living Organ Donors, Inc. All Rights Reserved
traditional