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 her son Eddie was diagnosed with IgA Nephropathy (IgAN) at age 13, Bonnie
and her husband felt lost and isolated. This profound experience motivated them to
create a foundation that would ensure no family felt alone in their battle against IgAN.
Today, the Foundation has become a beacon of support, advocacy, and hope for
patients around the world.

Bonnie speaks to the Foundation's mission to support and empower patients with
information and to push for better and more targeted treatments and, ultimately, a cure.
She highlights key milestones, including the launch of our annual SPARK meeting,
reflecting on the emotional power of these gatherings: "Seeing the tears of joy, hugs,
and the exchange of contact information… that's really, really powerful."

Over the years and like any new endeavor, the Foundation has faced challenges, but
perseverance and faith have been Bonnie's guiding principles. She recalls moments of
doubt and credits her unwavering commitment to the cause and the support of her team
for pushing through. "I made a deal… you just leave me the breadcrumbs and make
sure I'm heading in the right direction." Her advice for anyone facing obstacles is simple:
"Don't give up, just keep persevering."

Bonnie's vision for the future is global, as the foundation is working to expand its reach
and make sure no patient, regardless of location, feels alone. As she proudly states,
"We want to be that life-saving community." Through new therapies, clinical trials, and a
growing IgAN community, the Foundation continues to push for progress, always
keeping the patient voice at the heart of their efforts.

Support and Info Available Here

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 helped them grow closer despite their struggles.
Yulanda's diagnosis came as a shock for both. The uncertainty and lack of information
about the disease left them grappling with fear and confusion.
There is a very definite learning curve that comes with becoming a caregiver/care
partner, Steve shares – it's about leaning in, learning about the disease, asking for and
accepting help, and realizing it's OK not to have all the answers. Consistently showing
up and being there through the ups and downs is what matters most. But to do so, you
have to take care of yourself so you can be present for and stay in sync with your loved
one.
The two speak openly about the unexpected emotional and physical strain on both
patient and care partner and how the dynamics of their relationship have shifted with the
diagnosis. Steve emphasizes the importance of communication, patience, and
understanding in his role as a care partner, while also acknowledging the personal
struggle that often accompanies it.
This episode is a must-listen for anyone affected by IgAN, especially caregivers and
care partners. Yulanda and Steve offer wisdom to others facing IgAN, reinforcing the
importance of staying connected, communicating openly and grounding themselves in
love. Their story is a reminder that while the journey may be long and challenging, it is
also filled with moments of deep connection, love and hope. Their commitment to each
other and to the IgAN community offers inspiration and comfort to those facing similar
struggles.
Yulanda and Steve have been together for over 38 years and celebrated their 36th
wedding anniversary on November 5, 2024. Together, they have four children and
seven grandchildren. Both are retired, Yulanda from Civil Service and Steve from Law
Enforcement. They enjoy spending quality time with family and friends capturing
moments that last a lifetime.
Both Yulanda and Steve talk about how the IgA Nephropathy Foundation has supported
them in their journey, helping them connect with others going through similar
experiences – offering empathy, understanding and a sense of belonging.

IgAN Support and Information

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. Patients may experience feelings of loss, depression, fear, denial, anger, or frustration over changes to their health and uncertainly of what the road ahead might look like. Loved ones often feel overwhelmed too faced with new responsibilities and concern.

In this episode, we speak with David Walter, D.O, psychiatrist and ambassador for the IgAN Foundation. Dr. Walter specializes in helping patients manage chronic illnesses like Crohn's, colitis, and more. He also plays an active role in raising awareness for IgAN to help advance the Foundation's mission and reach patients earlier in their journey.

David delves into the essential connection between mental and physical health for individuals with chronic illnesses. As someone who lives with chronic conditions himself, he provides a relatable and practical perspective on mindfulness, emotional awareness, and the importance of prioritizing mental well-being amidst daily challenges.

He explains the concept of medical PTSD and how past medical experiences can continue to impact mental health. Through this lens, David shares practical tips for positive coping and incorporating mindfulness into daily life, emphasizing the importance of starting small and building consistency. Drawing from his personal journey, he also offers advice on managing stress, setting boundaries, and avoiding comparison—especially in today's social media-driven world.

His insights are equally valuable for patients and their families, underscoring the importance of open communication, self-compassion and seeking support.

Key Takeaways from the Episode:

● Mindfulness: Simple practices like deep breathing and mindful walking can help ease anxiety and improve emotional regulation by keeping individuals grounded in the present moment.

● Acceptance: Embracing one's emotions and circumstances without judgment is crucial for maintaining mental well-being, particularly for those with chronic illness.

● Communication and support: Open communication with loved ones and seeking professional help can strengthen relationships and provide emotional relief for both patients and caregivers.

David's experience serves as an important reminder that mental health is just as vital as physical health.

IgAN Support