It’s not easy to get new information regarding current research in IgA Nephropathy. So with that in mind, I wanted to give a heads up to everyone who wants to learn more about where things stand currently and where they may be headed when it comes IgAN treatment and research.
IgA Nephropathy and You is a free live webinar brought to us by Nephcure Kidney International and it will be taking place on Friday May 15, 2020 from 4:00 – 5:00 PM EDT. You can check out the full flyer below, but I just wanted to point out that this is a rare opportunity to be brought up to speed on current developments.
If you are interested in attending, please be sure to register before hand. The link is provided in the flyer. I hope you’ll be there!
Researchers and scientists are hard at work trying to figure out what makes certain diseases tick. At the time of this writing Covid-19 is the 800lb gorilla that the medical community is trying to chase down, but let’s not forget about Alzheimers, Cancer, Parkinson’s Disease, and of course Kidney Disease among so many others.
One of the avenues researchers are investigating is the science of how certain proteins fold to make up the necessary systems in the human body and how they can cause (and help cure) diseases. I won’t pretend to be an expert on folding – I know next to nothing as a matter of fact. So here’s a snippet from the folks at Folding@Home:
Folding refers to the way human protein folds in the cells that make up your body. We rely on the proteins to keep us healthy and they assemble themselves by folding. But when they misfold, there can be serious consequences to a person’s health.
Folding@Home is a project dedicated to disease research. Since this research requires a lot of computing power, the approach they use is to delegate out units of work to volunteers who run the Folding@Home utility on their computers. With this software you can download the assigned units and your computer will perform the necessary computations and send it back up to the research site where they put the pieces back together and do all the sciency stuff that is over my head. But that’s the nice part – we can be completely science illiterate and still help out.
The @Home concept isn’t a new one. There are a large amount of projects out there in other areas (though typically science related) that use shared computing resources in this manner. If you’ve heard of the classic Seti@Home project which searches for evidence of extraterrestial life, the work is similar.
Are you interested in taking part in this process and potentially being the volunteer that opens the door to a cure for a disease? I recommend checking out the Folding@Home website to learn more about who they are, how the process works and how to install the software on your computer. Speaking on my own experience, the installation to my Fedora desktop was very easy (it does require an account on their site so they can manage the work), so I expect it will be just as easy if not more so for Windows and Mac users.
If you do decide to take the jump, please consider joining the Folding@Unfiltered team which at this time consists solely of yours truly. Let me know how your experience goes!
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, our companion page on Facebook, and our online forum 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.
While my goal is to pull together other patients who are coping with Chronic Kidney Disease in some form or another, I’d also like to reach out to you healthy people and ensure that you never have to join our ranks.
For all the advances in treatment options that may be coming down the road, do you know what still remains the best treatment for kidney disease?
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?
So a couple months after my diagnosis after nearly exhausting my web searches for kidney disease, I finally remembered to branch out and being something of an avid reader decided to track down some Kidney Disease themed books. To my surprise and disappointment, there isn’t a whole lot out there.
The Kidney Projectreleased a brief update on their Facebook page on March 10 regarding the push toward the clinical trials. In have had some discussions with the FDA already and they expect to have two or three more over the coming months so that they can (hopefully) submit the full application package over the summer.
Based on the tone of the update they sound cautiously optimistic that this is going to move forward, but the reality is it will likely continue to be a slow process. It’s just how it works when you try to bring this sort of product to market. There are a ton of safety requirements that have to be met before they can even think of starting clinical trials so it’s understandable why they have to take a very deliberate pace.
You can read the official update by following this linkto their Facebook page.
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!