If you are patient, parent, or person otherwise impacted by nephrotic syndrome living in the New England area please be aware that Nephcure Northeast is here to support you on your journey. The Nephcure organization is in the process of strengthening our outreach efforts by focusing within regionally based communities. Nephcure Northeast is the evolution of the old Nephcure New England group. In addition to the New England area, Nephcure Northeast also serves the New York, New Jersey, Pennsylvania, Maryland, Virginia, and Washington DC area.
If you are a member in one of these communities, we hope you will join us so we can make this journey together in support of each other and help make an impact in the future of treatment for the various diseases that got us here.
There’s no fancy forms to fill out, interrogations, or hazing rituals involved. Simply go to our Facebook group at the link below and click on the ‘Join’ link to request entrance. We will get you approved as soon as we see your request.
Once you have access feel free to post an introduction. You’ll find we’re a welcoming bunch!
The IgA Nephropathy Foundation of America has announced the Spark 2021 IgAN Symposium which will once again be held virtually. This year it will be a one day event taking place on Saturday August 21, 2021 from 9:45 AM to 5:00 PM.
Please note that as of this writing registration information hasn’t been made available, but once it is you will be able to find it at the above link. I will also post more details of this event as the year goes on.
Please consider attending if you or a loved one have been impacted by IgA Nephropathy. I can’t stress how important it is to become educated on this life altering disease.
If you have any questions feel free to reach out to me either via email or in the comments below.
Be on the lookout for B Positive, a new sitcom appearing on CBS. You can catch it on Thursday nights at 8:30. This show centers on a newly divorced man who is suddenly and unexpectedly diagnosed with kidney disease. He then gets an offer of a kidney donation from an unlikely source after reconnecting with an old friend.
This series is unique in that the plot focuses largely around a man’s journey with chronic kidney disease, something not well represented today in pop culture. I hope it helps shine a light on a disease that silently affects millions of people.
I just finished watching the pilot episode. Since I don’t watch a ton of sitcoms these days it’s hard for me to really give it a good assessment. That being said, as a pure comedy, it’s not exactly Seinfeld, but I do think the characters will grow on us over time. I’m already finding myself instinctively nitpicking how some of the diagnosis and treatment aspects are depicted, but I’m also realistic enough to know that a 30 minute sitcom will need to take some liberties at times with some of he technical aspects of CKD treatment. With that understanding, what I’ve seen so far is actually quite well done.
I encourage people to check it out and spread the word. Let me know what you think in the comments below!
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.
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?