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January 31, 2018 by Jessica Martin 16 Comments

Comments

  1. Frances McDonald says

    February 14, 2018 at 12:25 am

    Thank you for all the information of living with kidney disease.
    I noticed you advise to read food labels and to eat herbs/spices that don’t include salt – such as onion powder not onion salt. I have been advised lately by an Australian herb company that food laws do not require companies to list if they have used salt in the drying/processing of herbs/spices which means the food label is not useful to those who have kidney disease .

    I have type 1 Membranoproliferative Glomerulonephritis and are interested if you have any recipes which may help.
    Thanks
    Frances McDonald
    Australia

    Reply
  2. Courtney Koelsch says

    February 16, 2018 at 1:34 pm

    I am interested in applying for the NephCure Kidney International-NEPTUNE Ancillary Studies Grant Program (see attached). Per the Review Time Line, receipt of final NEPTUNE Ancillary Study Application is due 3/16/18. However, the deadline to NephCure Kidney International is 6/8/18. Can you please explain the difference in these deadlines?

    Review Time Line
    • Deadline to submit a letter of intent /NEPTUNE Ancillary Study Concept Sheet to NEPTUNE (email NEPTUNE-STUDY@umich.edu for more information): February 8, 2018.
    • Deadline for receipt of final NEPTUNE Ancillary Study Application (email NEPTUNE-STUDY@umich.edu for more information) : March 16, 2018
    • Deadline for application to NephCure Kidney International (email research@nephcure.org for more information): June 8, 2018, 8 PM Eastern Time (no exceptions)
    • Announcement of preliminary intent to award project: October 2018
    • Completion of Just-In-Time process (necessary IRB approval/amendment): December 2018
    • Notice of Award
    • Project Start Date: January, 2019

    Reply
  3. Ridwan Tarabishi says

    June 22, 2018 at 6:20 am

    Do you have any dates for the nephrotic syndrome symposium for this year

    Thanks

    Reply
  4. Alvaro says

    July 25, 2018 at 12:27 pm

    Hi! I believe I fill all the criteria of a support volunteer and I would love to apply for that. How would you go about doing that(the link presented doesn’t work). Thank you! Alvaro

    Reply
  5. Ciara Dillon says

    October 2, 2018 at 10:26 pm

    Hi, my name is Ciara Dillon and I was diagnosed with Nephrotic Syndrome at a young age. I loose a lot of protein and would severly get sick. I suffered many years and would like to help boost awareness and medicine. I am currently trying to raise $5,000 to help donate and fund an awareness or medical center to help find ways to help. Please email me back if you are interested in me going forth in my project.

    Reply
  6. Daniel F Buller says

    October 6, 2018 at 3:01 pm

    I am interested in applying for the NephCure Kidney International-NEPTUNE Ancillary Studies Grant Program

    Reply
  7. Sarah Coggan says

    December 1, 2018 at 2:38 pm

    Hi my name is Sarah and I would like to recieve emails about upcoming Nephcare events globally. Im not sure your sign up page is working.

    Reply
    • Lauren Eva says

      December 13, 2018 at 10:41 am

      Hi Sarah! Thanks for your comment; we did receive your submission and will add you to our email list. I also wanted to make sure you are aware of this research opportunity: https://nephcure.org/research/apply-for-research-grants/
      Thank you!

      Reply
  8. Monica Martin says

    March 14, 2019 at 8:15 am

    Could you please direct us to integrative doctors that specialize in kidney disease located in either the Alabama or Southern California area?

    Reply
  9. Wayne Watson says

    April 25, 2019 at 3:29 pm

    Hello Kelly thanks for the response I have stage3 renal, its tough finding something to eat. Dr.s are not doing anything that helps diet related and really nothing much of medical advice. Diet is the big problem thanks for the response again

    Reply
  10. Wayne Watson says

    April 25, 2019 at 3:31 pm

    Help🤔

    Reply
  11. Anna says

    June 1, 2019 at 6:04 pm

    Hi I was wondering if any of you know a app for Android or devolp one that can track the protine levels, kidney function,surgery’s, meditation and dosages weight, hospitalization, appointment,Dr contacts,and maybe even have a digital version of insurance has anyone seen something like this

    Reply
  12. Charlene Vollmer -Spfd. Il. says

    July 6, 2019 at 6:03 pm

    I watched the first session on Facebook of the Clinical Trial Recruitment Collaborative. Kevin Fowler did a wonderful job and the panel as well. Could stop stay and watch all of the day and wondered if there will be a condensed version or print of it later?

    Reply
  13. Charlene Vollmer -Spfd. Il. says

    July 6, 2019 at 6:06 pm

    I sent previous comment wondering if the broadcast on Facebook of the Clinical Trial Recruitment will be published for view? could not view all on Facebook.

    Reply
    • Kylie Winkler says

      July 22, 2019 at 3:54 pm

      Hello Charlene. The livestream of the entire Clinical Trial Collaborative Meeting is up on our YouTube channel. The link is here: https://www.youtube.com/watch?v=EcPy6r_YDsU If you click on ‘show more’ in the description below the video, you’ll be able to jump to different sections/portions of the day… all you have to do is click on the time stamp.

      Reply
  14. Tom Judge says

    November 30, 2019 at 9:26 pm

    I am an 87 year old male, diagnosed with unqurable Chronic kidney by a specialist in 2012my GRF was 42.5 and was down to 34.5 6/22/15.Shortly after I began Qi Gong training (the ancient Chinese medicine art that teaches how to breath to the diaphragm) and circulate more oxygen throughout one body. This requires a minium of 15 minutes daily. In the first two years I worked-up to one hour daily. By 6/13/17my GRF had reversed and was up to 37.6 and as of 6/27/19 is up to 41.0. These statistics are of record in Fl. and Tn.hospitals.

    Reply

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NephCure Kidney International’s ® mission is to accelerate research for effective treatments for rare forms of Nephrotic Syndrome, and to provide education and support that will improve the lives of those affected by these protein-spilling kidney diseases.

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