CKD Insider Newsletter Newsletter
- one track health
- Jan 3
- 5 min read
Updated: Jan 3
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! The CKD Insider Newsletter provides actionable information for you and your family to help you manage your health in consultation with your doctor.
In this month’s CKD Insider:
Latest News from Kidney Organizations
Emergency Preparedness Resources
As you might have noticed lately there has been severe weather across the country including heavy rain leading to flooding, snowstorms, and extreme cold, it’s important to be ready for anything. These conditions can make it hard to get to a dialysis center or affect your ability to do home dialysis. Planning ahead can help you stay safe and avoid missed treatments. The resources below are to help you and your family during this time.
Emergency Preparedness Resources:
Your Fun Tip of the Day
Remember Those You Love with Gratitude
This time of the year can be a beautiful happy time and also a very hard time for those that have lost the people closest to them. Being grateful for what you do have can make a big difference on how you move through your day. You might be surprised by the difference taking a few moments during your day to focus on gratitude can make.
Focusing on gratitude has been shown to reduce stress, improve sleep, support heart health, strengthen the immune system, reduce symptoms of depression and help people cope with chronic illnesses.
Try these simple ideas to help keep gratitude at the forefront or your mind throughout the year:
Whenever you feel joy, love and gratitude write it down even if it is at the end of the day and put as much detail as possible- who you were with, what made you smile, and how it made you feel. Keep these notes in a small notebook or on your phone so you can return to them on tougher days and get transported back in time and feel the warmth of those memories.
Make a video memory book with pictures that mean the most to you. You can add to it throughout the year, and at the end of year created a year in review one to remind you of all the wonderful moments that you might have forgotten. While Google or Apple may create albums for you, this one is special because you hand-pick the moments that truly mattered.
If you lost anyone close to you recently, you can create a memory book for that person. It will help bring up memories and enjoy the memories when your ready to talk about them and all they brought to your life. Talking and remembering with others is the best way to honor them and keep their memory alive and close to you.
Draw a heart on a piece of paper with your name in the center and write the names of people you love along the heart outline including family, friends, neighbors, caregivers, pets, even the person at the corner store that smiles at you. Seeing those names can be a powerful reminder that you are surrounded by care and connection, and help you to pick up the phone and get connected.
Small moments of gratitude add up. One loving thought at a time can bring calm, strength, and hope to your day.
FDA Approves Yartemlea® to Treat Transplant-Associated Thrombotic Microangiopathy
What it is:The Food and Drug Administration (FDA) has approved narsoplimab (brand name: Yartemlea) for the treatment of hematopoietic stem cell transplant (HSCT)–associated thrombotic microangiopathy (TA-TMA) in adults and pediatric patients 2 years of age and older. Narsoplimab is a monoclonal antibody that targets MASP-2, an enzyme essential to activation of the lectin pathway of the complement system (part of your immune system). Yartemlea is the first and only FDA-approved therapy for TA-TMA.
Why it’s important: If you or a family member has had a stem cell transplant, a condition called TA-TMA can sometimes develop. This happens when the inside lining of small blood vessels becomes damaged. When that lining is hurt, the body’s immune system can overreact and cause even more damage instead of helping.
This extra damage can block blood flow, harm the transplanted cells, and put a lot of stress on important organs—especially the kidneys. Many people with TA-TMA develop serious kidney problems, which can affect how well the body removes waste and controls fluid.
Yartemlea is important because it is the first FDA-approved treatment made specifically to calm this harmful immune reaction. By protecting blood vessels, it may help lower the risk of ongoing damage and serious kidney problems.
Clinical Trials That are Currently Recruiting Participants
Below is a list of clinical trials currently recruiting participants broken down by area of study. The American Association of Kidney Patients maintains a list of current clinical trials. You can always check this list for trials you or your loved ones may be interested in here.
Primary Membranous Nephropathy (PMN)
AUTUMN (for adults)
AUTUMN is a Phase 2 Clinical Trial for Primary Membranous Nephropathy, or PMN, to test a candidate treatment called ALXN1920. PMN is an autoimmune disease that targets the kidneys. ALXN1920 blocks a part of the immune system that causes inflammation in the kidney. Learn more and check eligibility here.
PROMINENT (for adults)
The PROMINENT clinical trial is a Phase 3 study of PMN to evaluate a potential treatment, Felzartamab, against two other therapies. Felzartamab targets a type of immune cell called plasma cells, which produce antibodies. Learn more and check eligibility here.
IgA nephropathy (IgAN)
I CAN (for adults)
The I CAN trial is a Phase 3 study evaluating ravulizumab for the treatment of IgA nephropathy (IgAN) to slow kidney disease progression in adults. Ravulizumab has been approved for other diseases to block a part of the immune system that contributes to organ damage. IgAN is the buildup of IgA antibodies in the kidneys, leading to damage. Learn more and check eligibility here.
I CAN Junior (for pediatric)
The I CAN Junior clinical trial is also a Phase 3 study to test ravulixumab for the treatment of IgAN. However, this trial is designed for pediatric patients ages 2 to 17. Learn more and check eligibility here.
PREVAIL (for adults)
The PREVAIL clinical trial is also a Phase 3 study for IgAN in adults. This study evaluates Felzartamab administered by IV. This is the same drug being tested in the PROMINENT trial but administered a different way. Felzartamab blocks plasma cells, which produce the IgA antibodies that accumulate in IgAN. Learn more and check eligibility here.
CKD with Diabetes Type 2
PROACT I (for adults)
PROACT 1 clinical trial is a Phase 3 study to test a new intervention called rilparencel, which is a
candidate cell therapy product prepared from your own kidney cells. The goal is to assess whether rilparencel can stabilize kidney function and delay progression to end-stage kidney disease in patients with CKD and Type 2 diabetes. Learn more and check your eligibility here.
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