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May 2023 CKD Insider Newsletter

Welcome to the Chronic Kidney Disease Insider Newsletter. If you are living with chronic kidney disease (CKD) on dialysis, have had a kidney transplant or are helping care for someone who is, this newsletter was created for you and your family! The content is meant to keep you and/or a family member up to date on the latest information to help you manage your health now and in the near future in consultation with your physician. In this month’s CKD Insider: AAKP Stop the Itch webinar & Global Summit, IPRO ESRD Monthly Support Group, TransplantLyfe Clinical Trial Resource, ESRD Emergency Hub Mobile App, Innovation Update and your Fun Tip of the Day!


News from Kidney Organizations

AAKP Webinar: Stop the Itch: Understanding & Managing CKD-Associated Pruritus (CKD-aP)

The American Association of Kidney Patients (AAKP) is providing you with this webinar to help you learn how to manage itchy skin. AAKP has arranged for 4 speakers including people on dialysis and MD and PhD presenters who will be speak on ways to manage with itchy skin.

June 1, 2023 - 3:00-4:00 PM EST

Learn more here or register here.

June 3rd is National Itch Day.

AAKP has created a short pocket-guide to help you manage itches here.


The 5th Annual Global Summit on Kidney Innovations

The American Association of Kidney Patients (AAKP) & George Washington University are jointly hosting the 5th Annual Global Summit on Kidney Innovations Summit. This event is the world's largest patient-led conference on kidney innovations. June 28th-29th, 2023 Virtual and in-person You can learn more or register here.


IPRO ESRD Patient Event: Monthly Support Group The IPRO End Stage Renal Disease (ESRD) Network hosts a monthly support group. In June, you can join the IPRO ESRD Network to discuss treatment and mental health issues that impact you and your ESRD peers. June 28th, 5:00 – 6PM EST Join Webex Meeting here. Meeting number (access code): 616 535 334 Meeting password: IPROPFR Join by phone: 1-855-797-9485


TransplantLyfe Clinical Trials Education Library TransplantLyfe has released a Clinical Trials Education Library to raise awareness and provide resources for those interested in participating in a transplant clinical trial or looking for information for navigating life after kidney transplantation. Access the Library here.


NKF June KidneyWalk Events The weather is getting beautiful in many parts of the country and there are quite a few NKF KidneyWalk events taking place in June. The KidneyWalk, organized by the National Kidney Foundation, is a fundraiser and awareness event that raises funds for kidney disease research, advocacy, and transplantation. Find a KidneyWalk near you here.


Your Fun Tip of the Day!

Brain teasers!

Are you looking for fun things to do while in dialysis or relaxing at home? How about trying brain teaser games? Brain teasers come in many forms, they can test your knowledge, keep your brain sharp and give you a good laugh! Check out the options below. Have fun!

  • These have the answers right after the question - so a bit of an easy cheat. Use a piece of paper to cover the answers as you read through so you can test your brain first!

  • Answers are included but they are bit further down, so scroll slowly to give yourself time to test yourself.

  • Tip for web browsing: The webpages above have a lot of ads. Open the link in the Firefox browser - go to the top right of your browser where the web address is located and look for an icon that looks like a piece of paper with writing on it, click on it, and the ads will clear away making it easy to read!

  • This is like the board game Boggle. You are given 7 random letters and you have to create as many words as possible in two minutes (You can also play without the clock).

  • This game will test your vocabulary and memory in 3 ways. This game is free to play for seven days, but then requires a monthly membership fee.)

  • This requires you to download the free mobile app to play.

  • 40+ games included that focus on reading, writing, speaking, and math. You can track your progress to see how your skills are improving.

Fun brain games to do during your day - no computer or phone required!

  • Puzzles, Trivia, Mentalrobics, Games & Community are the categories to pick from. This website provides more than 15,000 puzzles, games, and other brain teasers as well as an online community of enthusiasts. You can even create your own puzzles to give your brain a super workout. Braingle has a wide variety of offerings, including optical illusions, codes and ciphers, and trivia quizzes.

  • This web-based puzzle game from The New York Times has become popular with people that like to compete with their friends. Each day users get six tries to guess a five-letter word. You can create a group text with your friends and post a picture of how many tries it took you to guess the word and see who is the fastest that day!


The ESRD Network Program has released the ESRD Emergency Hub App

What it is: The ESRD Emergency Hub App is a free app for smartphones and tablets that includes resources and tools to create and store your treatment information, emergency resources and contacts to make them easily accessible in the event of an emergency. The App was designed to help people with kidney disease who are on dialysis or have received a transplant prepare for and stay safe during an emergency.

Why it’s important to you: In the event of an emergency, such as a tornado, flood, fire, or other natural disaster, finding an open dialysis clinic or healthcare provider can be critical.The ESRD Emergency Hub App will send location-based alerts and updates to help you navigate emergencies.

Learn more and get the download links for Apple and Android here.


Future Innovations bring HOPE for people on dialysis

What it is: The Wellcome Leap Program in Human Organs, Physiology & Engineering (HOPE). This Program is focused on producing the first functional kidney unit for humans that can replicate human physiology including immune responses. Their goal is to provide you with enough kidney function to get you off of dialysis.

The HOPE can be found in the team: The Wellcome Leap CEO is Regina E. Dugan, who served as the 19th Director of DARPA (Defense Advance Research Projects Agency). She has the experience and leadership needed to make this program a success. As Director of DARPA she oversaw a large portfolio of projects including the development of RNA-based vaccines. The support for research on RNA based vaccines before the COVID-19 pandemic was instrumental in speeding up the time frame of vaccine development.

The Wellcome Leap chair is Jay Flatley the former CEO of illumina who helped transform gene sequencing from a scientific pursuit to a commercially accessible service that has made a difference in countless lives.

Regina Dugan has assembled a team who want to make an impact on the world. They have clear testable goals and a plan to move fast. We can all agree, providing kidney function to those of us with ESRD on dialysis will make a large impact. Let's all wish the team success!

Why it's important is clear, no dialysis needed in the future.

Learn more at Wellcome Leap.


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