Nephcure Kidney International will be hosting their annual summit gathering on Sunday May 16, 2021 from 12:00 PM to 4:00 PM. The event is going to be held virtually this year.
This is a great opportunity for patients from across the globe to gather and learn about some of the latest advancements in research and treatments. This will also serve as a virtual ‘meetup’ for patients with nephrotic syndrome to share their experience with the diseases that brought them here.
Even better, this is a free event! If you are interested in attending you can sign up using the link below:
Just a quick note here that Nephcure has announced the annual Countdown To A Cure here in Boston. Like a lot of events last year, the 2020 event was a virtual event due to Covid-19. This year it is scheduled to take place in-person at the Boston Marriott Quincy, assuming the pandemic is in under control by then.
Date and location are as follows:
Boston Marriott Quincy Saturday September 18, 2021
If you are interested in attending or sponsoring, you can find more information below:
I’ll be writing more on this event as the year goes on.
I’m way overdue for an update here on what I’ve been up to over the past several months. I’m happy to report that things have been, well, quiet. Good quiet. With the gradual opening of the state after the lockdown, I’ve done a good job of minimizing my exposure to others for the most part. In spite of the pandemic, I haven’t exactly been standing still.
Welcome back to those who have been following my journey and also a big welcome for those of you who are visiting this site for the first time. I hope you’ll read up on the rest of my ramblings and follow along. Between this site and our companion page on Facebook it’s good to see some new visitors giving us a look. Be sure to follow this site to stay up to date with my health journey and more importantly the thing everyone wants more of – my opinions.
If you are following the developments of the Covid-19 virus as most people are at this point, you know that a lot of information is flying towards us at a pretty fast pace right now. Things are a little confusing and very much out of the ordinary. If you are a kidney disease patient with autoimmune concerns, this is especially true.
Below is a short video that was posted on Youtube by Nephcure Kidney International with some general advice for kidney patients (a lot of this applies to everyone really) on how to avoid the virus as much as possible and what to do if you feel you may be getting sick.
If you are like a lot of people there’s a chance you’ve never heard of Nephrotic Syndrome. It’s also possible you are now reading this because you’ve only recently been diagnosed or have a loved one who been diagnosed with this condition. I know I’m still trying to sort out not just the different diseases that result in NS, but why they are such a common cause of kidney failure. There’s a lot to learn here.
This video, a webinar from 2017 hosted by Nephcure Kidney International is a great introduction to NS by Dr. Mindy Banks. It runs for just under an hour and I recommend carving out some time watch her presentation as she does a good job of covering a lot of ground not just for relative newcomers like myself, but she also answers some questions for patients and parents who have already been struggling with this condition.
Are you new to Nephrotic Syndrome? How has it impacted your life?
Nephcure Kidney International has recently announced the second annual Boston based fundraising gala Countdown To A Cure will be taking place on Saturday September 26, 2020 at 6:00 PM. The event will be held at the Boston Marriott Hotel in Quincy, Massachusetts.
I for one am looking forward to this event and meeting up with other patients and learn how they are coping with the various forms of kidney disease. This event will raise funds for Nephcure, which will in turn be used to help fund medical research that will eventually lead to real treatment options and hopefully keep more and more people from needing dialysis and/or transplants.
I hope to learn more about this event in the coming weeks and will pass on any relevant information as it comes along. Let us know if you plan on attending in the comment section!