Education

I came across the following website: http://www.nephronpower.com/. It is a blog for nephrology education materials, mostly for training fellows. The best part is that it provides scientific findings in easy to read formats. I found it interesting and thought you might too. Have a great week, everyone.

Here is a link to the National Institutes of health info for physicians. I found some info that indicates that 0.8 grams of protein per KG (2.2 pounds) is sufficient for normal body functioning. That works out to about .4 grams per pound. Since body builders do about 1 - 1.5 grams per pound, 0.4 should be fine for the average Joe or Josephine.

http://www.nkdep.nih.gov/identify-manage.shtml

How do you keep track of how much protein you are taking in? I use a program called Diet Power but there are some free apps out there including one on Livestrong.

INTERACT with medical professionals MEET other patient families LEARN about: • Nephrotic Syndrome and its causes • Research and what it means to you • Treatment options • Patient Support Activities Registration is FREE! (Includes a light lunch) When: Saturday, November 10, 2012 9:00am - Registration 9:30am to 12p.m. - Speaker Sessions 12p.m.

Please join us for our upcoming Free Lunch & Learn Educational Seminar for Nephrotic Syndrome patients families in Cleveland on November 10th. This is a great opportunity for you to connect with families in similar circumstances while learning about the latest treatments and research updates, renal nutrition and more. Register now so that the speakers can tailor their presentations to meet the needs of the patients in attendance. Just select the Education & Support Link or the News & Events Link above and then select Lunch & Learn.

Hi, For those of you in or near Atlanta, there will be a lunch and learn this Saturday (July 14th) from 9:00 AM - 1:00 PM. It will be held at The Carter Center - 435 Freedom Parkway Atlanta, GA 30307. Childcare is available for those that need it. If you're interested in attending, please try to RSVP today or as soon as possible. The link to register is: http://www.nephcure.org/nephcure-lunch-learn Hope to see other families there! Alisan

 Salt free, fat free, dairy free, gluten free, Low protein, High Fiber, HIGH FLAVOR Use low potassium vegetables, leach the sweet potatoes to keep the phosphorous down

When I went vegan I adapted this from a Peruvian seafood staple. The sweet potato with the lemon and onion is surprisingly delicious and refreshing. There is a lot of chopping, but it is worth the effort. You can serve with rice or flour tortillas (not calculated into nutrient content) if you need a little more “filler”.

I recently had the opportunity to participate in a phone conference with Questcor pharmaceuticals that was hosted by Nephcure. Questcor is the manufacturer of Acthar Gel. Because I'm taking this medication, I had a very special interest in participating...I mean, how often do you get the chance to speak directly with the manufacturer of your medications?

Attn: NephCure New England Please join us this Thursday, June 21st 7:00pm at the Canton Public Library for the TEAM NEW ENGLAND NEPHCURE MEETING. It's a great opportunity to meet other patients & families who can relate to what you're going through. Dennis Begany, a local adult living with Nephrotic Syndrome (diagnosed in childhood), will start things off speaking about his experiences.

Receiving monetary compensation for kidney donation is illegal here in the US, but it's not illegal everywhere, like in Iran. http://www.rferl.org/content/iran-human-kidney-trade/24613082.html

I'm not currently a dialysis patient.  However, when my kidney function started to decline and I started to do some research, I headed to YouTube, where I was horrified at some of the things I saw.  

Since then, I've been able to see some fistulas that are hardly even noticeable, so I was wondering if there are more of you out there that would be willing to show yours.