Kidney Patient Advocacy Has a New Face — 60 of Them

advocatesThe National Kidney Foundation (NKF) has launched a new patient advocacy and engagement program to expand its grassroots network at the state level.

The Kidney Action Committee is comprised of 60 patient liaisons, including one from each state, who are personally affected by kidney disease. These individuals will use their experience to advise government agencies, research organizations, and policy and health organizations on kidney disease. They will also provide input on the development of NKF public policy positions and the implementation of kidney disease education programs.

This new program builds upon NKF’s Advocacy Action Center – a group of over 60,000 people who advocate on behalf of kidney patients.

“We’re strengthening our national advocacy presence by expanding our multi-state efforts,” said Kevin Longino interim Executive Officer of the National Kidney Foundation. “These 60 individuals will be the face of NKF at the state level. It’s an important role, but we have very dedicated volunteers who are passionate about making sure the needs of kidney patients are addressed.”

Members of the Kidney Action Committee will champion NKF priorities locally and nationally through media interviews, visits with lawmakers, and special events.

“As someone affected by kidney disease, I know how crucial advocacy and engagement is to furthering our cause,” said Alexandra Harrison, a newly-elected patient liaison. “I’m looking forward to creating local momentum behind the key issues that will make a positive difference for kidney patients in California and across the country.”

With over 73 million Americans at risk for kidney disease, National Kidney Foundation advocacy is more important than ever. NKF helps to shape public policy on behalf of kidney disease patients by working with Congress and federal agencies, as well as with state governments, to further legislation and regulation that improve the care and quality of life for kidney patients and organ donors.

“The expanded patient presence provided by the Kidney Action Committee will allow on-the-ground engagement to drive advocacy and organizing in all 50 states,” said Longino. “It’s a powerful program that is sure to make kidney disease a priority at the state and national level.”

About nkf _advocacy

The National Kidney Foundation's advocacy movement is for all people affected by CKD, transplant candidates and recipients, living and potential donors, donor families and caregivers. We empower, educate and encourage you to get involved on issues relating to CKD, donation and transplantation.
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33 Responses to Kidney Patient Advocacy Has a New Face — 60 of Them

  1. If the West Virginia representative needs any help, feel free to have them get in contact with me.

  2. Amy Staples says:

    I am a kidney mentor and would love to be part of this. Who is the patient liason for Missouri?

  3. Julie Fisher says:

    I would love to help! I live in California. My sister has kidney disease due to Lupus Nephritis. I am a match for a living donation when she needs it!🙂

  4. Marta Hayles says:

    I am in the Danbury ct area and have kidney disease I would like to be a part of the group and gladly give my time and effort to help with awearnes and volunteer in what ever way I can
    Marta Hayles

  5. Who’s the advocate from Ohio, would love to offer my assistance.

  6. I would love to be a patient advocate! I am in Illinois. Let me know if there is something that I can do!

  7. Valorie McNeely says:

    There is no better teacher to help with what pts. need than those who have been through it.

  8. Zoë Vaughter says:

    I donated a kidney to my son five years ago in Minnesota. I’d love to help with the advocacy for both kidney patients and donors. Please feel free to contact me. Thanks for the info about the Kidney Action Committee.

  9. Elma Shell says:

    I am in north central Florida and would love to become active with kidney issues.. I am currently on P.D. For the past 8 1/2 years

  10. Dorothy kotsovolos says:

    I would like to get more info on the representative for North Carolina please! My sister In law is being denied dialysis due to her having a trach she had a stroke 3 years ago! We as a family don’t know what else to do. Please help.

    • Hi Dorothy, Thank you for your comment. You may want to call our NKF Cares Information Helpline to talk with someone about this. NKF Cares is available Monday – Friday from 9:00 am – 5:00 pm Eastern Time. Call toll-free at 1.855.NKF.CARES (1.855.653.2273) or email nkfcares@kidney.org.

      You can also email nkfadvocacy@kidney.org and we’ll let you know how you can be involved with our advocacy efforts.

  11. Rebecca Pratt says:

    My daughter is in kidney failure, on dialysis. We live in Pennsylvania. We have a woman who would like to be tested. She lives in Buffalo, NY. Called Pittsburgh today. First question they asked was age, weight. Her health is good,but she is overweight. Was told to lose 95 lb,call back in Sept. Was upset with this response. She is willing to lose weight. But unenployed. We need help in getting her proper nutrition and exercise. Is there any help for this. My daughter is in need now.

  12. Allene Stewart says:

    I have been a Registered Nurse for almost twenty year’s, mostly in a Outpatient Hemodialysis center. I feel strongly about advocating and teaching my Dialysis patients. I often experience patient’s that know little about their kidney functioning, why they are at an incenter hemodialysis unit and lack basic education. I am currently looking for a cause and a way of preventing those experiences previously mentioned above from happening. If there is any way that I as a RN can help, I would love to participate or volunteer for a cause such as that, please contact me. I currently reside in Southfield, Michigan.
    Sincerely
    Allene Elizabeth Stewart, RN.
    Allene E

  13. e wolfe says:

    I just got an email from the National Kidney Foundation about their new “successful” campaign for Kidney Disease and it made me laugh (sarcastically) and made me angry!!!
    https://www.kidney.org/everybodypees

    It touts the fact that a simple urine test done by your doctor can detect early signs of Kidney disease. Well maybe they need to be telling doctors this!!!!!!!!!!!!!!!!!!!!!!!!

    I have diabetes, high blood pressure, family history of diabetes (which I found out after I was diagnosed), I’m overweight, and have other HIGH RISK factors that “SHOULD” prompt a doctor to say, “Let’s keep an eye out for possible complications like Kidney Disease, etc.” Over the last 30 years or so, I have seen family doctors, gastroenterologists, gastro surgeon, bariatric surgeon, cardiologists, Nephrologists, Diabetic Nutritionists and more…….and I’ve had tons of blood work, MRIs, Scans of all sorts, etc. and guess what….”””””NOT ONE”””, “”””NOT ONE”””” of them EVER even mentioned doing a urine test. NEVER!!!!!!

    Could my CKD have been caught long before I reached the point I was at when I finally became so sick that I had blood work done and got diagnosed with CKD??? “”””YES”””

    Is it my fault that it wasn’t found early? “””NO””””!!!! But guess who’s paying the price…….me (us).

    TELL DOCTORS TO DO URINE TESTS ON PEOPLE!!!!!!!!!!!!!!!!!!!!!!!!!!!! That will get far better results than people having to be educated and then urged to “ask/beg” their doctors to test them!!!!!!

    • Thank you so much for your feedback. We completely agree with you! We are in the process of creating a program called CKD Intercept to educate physicians about the importance of urine testing and early detection of kidney disease. But we can’t do it alone. This campaign is designed to empower people to take control of their own health as well as to educate and speak with their doctors. By creating awareness of kidney disease and its risk factors our hope is that everyone will receive a urine test when they visit their doctor.

  14. bobbiereed16 says:

    Hi, I am a caregiver to my 25 year old son who does home hemo-dialysis. We are searching for a living donor for him. We reside in Pittsburgh, PA and I am his biggest advocate/supporter. To become more in-touch with what is going on in the kidney community, I have registered and will be attending upcoming meeting of the National Kidney Initiative in Baltimore, MD in August and also the AAKP national conference in Nashville, TN in September. I want to know who my contact for advocacy is here in Pennsylvania. I feel I have much to contribute and want to become involved. Please get in touch with me. Thanks

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  17. Karen Green says:

    My husband developed CKD several years ago, which deteriorated to ESRD, requiring dialysis. Unfortunately, he pasted awaManyy 16 months ago. Not a day goes by that I don’t think of him and his valiant effort to survive. I am a RN who currently work with dialysis patients and I strongly believe that we in the medial profession do not do enough to teach and stress the importance of PREVENTION of HTN and DM. This needs to be added to the grass roots teaching for all individuals.

    I live in Philadelphia, PA and have been in contact with the Delaware Valley NKF Chapter. I hope to begin volunteering with them soon. Many thanks for all you do for those of us affected by CKD.

    • Hi Karen, thank you for your comment and your continued advocacy work for kidney patients. I am so sorry to hear about your husband. I know the NKF Delaware Valley office will be very appreciative of your offer to volunteer. Thank you!

      Erin Kahle
      Director, Constituent Services
      NKF

  18. Jamie Pullen says:

    I would love to be of assistance because my mom is on dialysis and her care by staff is not very good.

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  20. DevonTexas says:

    Exciting! I’m always ready to support an effort that benefits Kidney patients and,this looks like a wonderful group.

  21. Pingback: Kidney Patient Advocacy Has a New Face — 60 of Them | DevonTexas

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