Nephcure Northeast Has Arrived

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 group can be reached at Nephcure Northeast Facebook Group.

Nephcure Patient Summit 2021

A Global Online Gathering

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:

https://events.philanthropyrefined.com/e/NephcurePatientSummit

Nephcure’s 2021 Boston Countdown To A Cure

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:

https://give.nephcure.org/CountdownBoston/Donate/Tickets

What I Did on My Summer Vacation

How YOU Can Make A Difference For Clinical Trials

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.

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The Quarantine Edition: Lab Results From The Apocalypse

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.

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Covid-19 and 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.

It’s a short video and worth checking out.

Nephcure Nephrotic Syndrome 101 Webinar

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?