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Podcasts

Welcome to IgAN Journey – the IgA Nephropathy Foundation’s podcast. Here, we share information, tips, stories, and inspiration for living with IgAN. Using the power of our growing patient community, we are focused on funding research and building a network of support and ultimately finding a cure.

To learn more about IgAN, to get involved or help fuel our mission with financial support, explore our website. You can access this series for FREE on Apple Podcasts, Spotify, iHeartRadio, Audible, and all your favorite podcast platforms.


Episode 20: Celebrating 20 Years of Passion and Commitment

November 14, 2024

In this special episode, Bonnie Schneider, co-founder of the IgA Nephropathy Foundation, shares her journey and reflects on 20 years of service to families affected by this rare disease.  When …

Episode 19: Leaning In – A Journey of Love, Resilience and Care

November 14, 2024

November is Caregiver Awareness Month and, in this episode, Yulanda Brown and Steve Mayo talk candidly about their IgAN journey and how staying centered on what brought them together has …

Episode 18: Tips for Dealing with the Emotional Side of Living with IgAN

October 8, 2024

Living with IgA Nephropathy (IgAN) means not only managing the disease itself, as well as the related fatigue and other related health concerns, but also coping with the mental and emotional challenges come with having a chronic health concern.

IgAN Journey Episode 17

August 5, 2024

Family Planning and Pregnancy with IgA Nephropathy Compared with other kidney diseases, IgA Nephropathy tends to strike at younger ages, often coinciding with starting a career and/or having a family. …

IgAN Journey EP 16 – Managing High Blood Pressure and Emerging Therapies

June 5, 2024

For many people, uncontrolled or unexplained high blood pressure may be the first sign of IgA Nephropathy (IgAN). That’s because when the filtering capabilities of the kidneys are damaged, as …

Episode 15: One Day at a Time” – Advice from State Senator Kelly Hancock

April 29, 2024

Welcome to this episode of IgAN Journey. April is organ donation month – a time to honor those who have saved lives by donating the gift of a kidney of …

Episode 14: Caregiving – Taking Care of You and Being Resilient

November 20, 2023

In this episode, and in honor of Caregiver Awareness Month, Bonnie Schneider, co-founder of the IgA Nephropathy Foundation talks openly about her journey as a caregiver to her son, Eddie, and growing the Foundation.

IgAN Mindful Moments Introduction to Meditation

November 12, 2023

One big misconception many people have is that meditation is about clearing or emptying your mind. Thats not possible. Nor it is our goal. However, there is a big difference between “thinking” and “stressing”.

IgAN Mindful Moments: Guided Healing Hands: Meditation and Journey to Renewal

November 2, 2023

In this episode, we explore the concept of healing hands and their ability to transmit positive energy and healing vibrations. Join us as we guide you through a meditation designed to channel this energy towards your well-being while living with IgA Nephropathy.

IgAN Mindful Moments – Calm and Center with Deep Belly Breaths Meditation

November 2, 2023

In this episode, we explore the power of deep belly breaths as a way to manage stress and promote overall well-being for individuals with IgA Nephropathy.

IgAN Mindful Moments: Healing from Within – The Body Scan Meditation

November 2, 2023

Dive into a transformative experience with our body scan meditation. We’ll take you on a journey through your own body, helping you connect with your physical sensations and gain insight into managing symptoms related to IgA Nephropathy.

IgAN Mindful Moments: The Gratitude Practice for IgAN Warriors meditation

November 2, 2023

Cultivate a sense of gratitude in your journey with IgA Nephropathy. In this episode, we’ll explore the healing potential of gratitude through guided meditation.

IgAN Mindful Moments: Visualize Your Healing Journey with IgAN Meditation

November 2, 2023

Are you ready to embark on a journey of healing and self-discovery? Our “IgAN Mindful Moments” series explores the transformative power of mindfulness for individuals living with IgA Nephropathy.

Episode 8: IgAN Mindful Moments — Guided Sound Meditation Session

September 6, 2023

Join Franck Raharinosy as he guides you through meditation by immersing yourself in sound, focusing on your breath and being in the present. 

Episode 7: Finding Your Zen, Tools for Meditating and Regaining Calm

September 6, 2023

In this episode, we are joined by Fraqnck Raharinosy, an expert in sound meditation who shares how to meditation techniques can help, and how to integrate them into your daily life.

Episode 6: Tips for Kidney Friendly Eating

July 13, 2023

So it’s important that we consume foods that are friendly to our kidneys and easy for the body to digest and breakdown.

Episode 5: The Importance of Connection

May 12, 2023

Celebrating Mother’s Day and IgAN Awareness Day with Two Moms

Episode 4: New Treatments and Research for IgAN

March 30, 2023

The Future is Bright

Episode 3: Coping Post-Transplant

February 28, 2023

Part 3 of our 3 part series On Coping and Mental Health at Different Stages of IgAN

Episode 2: Mental health matters

February 28, 2023

Part 2 of our 3 part series on mental health and coping at different stages of IgAN

Episode 1: Tuning into your mental wellness and coping

February 28, 2023

Part 1 of our three-part series on minding your mental health along the IgAN journey

IgAN Journey Trailer

January 29, 2023

Whether you or someone you love has been diagnosed with IgA Nephropathy, you are in the right place for information, support and encouragement.

IgAN Journey Trailer

Whether you or someone you love has been diagnosed with IgA Nephropathy, you are in the right place for information, support and encouragement. This podcast is brought to you by the IgA Nephropathy Foundation. Our mission is to be a patient-centric organization focused on finding a cure for IgA Nephropathy. Using the power of the patient community we are focused on funding research, using patient advocacy to empower our patients, and building a network of support.

You are not alone.

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Episode 1

Tuning into your mental wellness and coping – Part 1 of our three-part series on minding your mental health along the IgAN journey

Summary:

Finding out that you have IgA Nephropathy (IgAN) can be scary. Many people are flooded by a range of emotions, as well as the uncertainly of how the condition might progress. It can be a difficult and complex journey, and managing the emotional and social effects of IgAN can be just as challenging. 

Guest Dr. Daniel Cukor, a clinical psychologist and the Director of Behavioral Health at the Rogosin Institute in New York City, works with people with chronic kidney disease to help them navigate their journey, find ways to cope and stay positive. But what does successful coping look like for those who are newly diagnosed with IgAN or who are at earlier stages of the disease?

In this episode, Dr. Cukor will discuss the process many people go through to accept and adjust to their diagnosis, how IgAN might affect one’s mental health, why it’s important to tune into and understand your feelings about IgAN, and how to develop effective coping strategies.

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Episode 2

Mental health matters – Part 2 of our 3 part series on mental health and coping at different stages of IgAN

Summary:

IgA Nephropathy (IgAN) is an autoimmune disease that attacks the kidneys. It usually progresses slowly, but some people with IgAN eventually develop end-stage kidney disease, which means they will need dialysis or a kidney transplant.  

Nearing dialysis or kidney transplantation can be an especially emotional time and can come with a series of stressors. There are often a lot of decisions to be made, but also a lot of “hurry up and wait” and these lulls of time can be hard. It’s important to stay in tune with your thoughts, emotions and support systems. 

We are grateful to welcome back our guest Dr. Daniel Cukor, clinical psychologist and director of Behavioral Health at the Rogosin Institute in New York City, to discuss some of the common struggles and coping mechanisms that often come into play at this stage of IgAN. 

In this episode, we talk about what people can do when beginning dialysis or preparing for kidney transplantation.

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Episode 3

Coping Post-Transplant — Part 3 of our 3 part series On Coping and Mental Health at Different Stages of IgAN

Summary:

IgA Nephropathy (IgAN) is an autoimmune disease that attacks the kidneys. Some people living with IgAN will need a kidney transplant. Finding a donor match, facing the anxiety about whether or not your body might reject the new kidney or of IgAN returning, and recovering after surgery aren’t easy tasks. 

To discuss some of the associated mental health challenges confronting people after receiving a kidney transplant, we are again joined by Dr. Daniel Cukor. Dr. Cukor is a clinical psychologist and Director of Behavioral Health at Rogosin Institute in New York City. 

Anxiety, recovery, medications, adjusting to your new life post-transplant, and re-establishing yourself, are just some of the things people go through, though everyone is different. Dr. Cukor shares three tips:

●        Be intentional in prioritizing your emotional health.

●        Focus on “what is” instead of focusing on “what could have been”.

●        Be proactive in adopting strategies for taking your immunosuppressing medications. 

He also shares the common experience of those who just went through a transplant of the tension between joy and sorrow, highs and lows, and gratitude and indebtedness. 

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Episode 4

New Treatments and Research for IgAN – The Future is Bright

Summary:

Guest Dr. Jonathan Barratt talks with us about two new treatments for IgA Nephropathy (IgAN) –the first specifically designed and approved for the management of IgAN.

TARPEYO® (budesonide, delayed release capsules) was approved by the U.S. Food and Drug Administration (FDA) in December 2021 and FILSPARI™ (sparsentan) gained approval earlier this year. Both are prescription medicines used to lower levels of protein in the urine (proteinuria) in adults with IgAN who are at risk of their disease progressing quickly. 

Dr. Barratt, who is a nephrologist at the University of Leicester in the UK, says their approvals mark a pivotal turning point for many people with IgAN and their caregivers. As principal investigator for many international randomized controlled clinical trials in IgAN, he has seen major advancements in treatments for IgAN, with many more clinical trials underway to study additional therapies and deepen our understanding of the root cause of the disease.

He encourages patients to learn about their IgAN, and ask about new treatments, including the potential benefits and side effects, as well as available clinical trials.

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Episode 5

The Importance of Connection: Celebrating Mother&#39;s Day and IgAN Awareness Day with Two Moms Ep 5

Summary:

When someone gets a life-altering diagnosis such as IgAN, it not only affects the person living
with it, but also the people around them. For parents, it’s a different and unique experience.
They provide support as they watch their child learn to cope and live with the impact of this
disease. It can be a lonely and worrying experience navigating what are often unchartered
waters, but it doesn’t have to be.

Today, we have with us Julie and Jeanette, two amazing moms of children who are at different
stages of their IgAN journey. Their budding friendship speaks to the little blessings that can
come from life’s challenges. Even though they live states away from one another, they met at an
event to raise awareness about the impact of IgAN, with both of their now adult children sharing
their experiences. That chance meeting led to the start of a life-long friendship rooted in shared
experiences, love for their children, music, and a mutual love for Babyface.

“I found that on this journey, it’s so very important to say it out loud, say that you’re scared,
anxious, that you don’t know the questions to ask, say that I’m shaking and I don’t know where
to go from here.” -Jeanette

Julie and Jeanette talk about how their friendship has helped one other. They share the
importance of making connections, being vulnerable and creating bonds that can help you
through these uncertain times.

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References

  • Hall, Y.N., Fuentes, E.F., Chertow, G.M. et al. Race/ethnicity and disease severity in IgA nephropathy. BMC Nephrol 5, 10 (2004). https://doi.org/10.1186/1471-2369-5-10
  • Kiryluk K, Li Y, Sanna-Cherchi S, Rohanizadegan M, Suzuki H, et al. (2012) Geographic Differences in Genetic Susceptibility to IgA Nephropathy: GWAS Replication Study and Geospatial Risk Analysis. PLoS Genet 8(6): e1002765. doi:10.1371/journal.pgen.1002765