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:

I’ll be writing more on this event as the year goes on.

What I Did on My Summer Vacation

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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An Ounce Of Prevention

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?

Not getting it at all.

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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?

Second Annual Boston Countdown To A Cure Announced

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!

See the official site for more information at: https://give.nephcure.org/CountdownBoston