A 20-Year-Old Caregiver on Huntington’s Disease, Genetic Testing, and Showing Up with Love

A 20-Year-Old Caregiver on Huntington’s Disease, Genetic Testing, and Showing Up with Love

This week on Mind What Matters, Elizabeth Humphreys sits down with Mariana, a 20-year-old nursing student and caregiver whose story is both heartbreaking and deeply inspiring. Mariana grew up watching her mother live with Huntington’s disease, a genetic neurological illness that can affect movement, mood, memory, and independence. At 18, Mariana made the decision to get tested herself and learned that she also carries the Huntington’s gene. In this raw and honest conversation, Mariana shares what it has meant to care for her mother through the progression of the disease, the emotional weight of hospice and end-of-life care, and the complicated reality of loving someone while also needing to protect yourself. She opens up about family, grief, advocacy, and the support systems that have helped her keep going. Together, Elizabeth and Mariana also talk about the hope surrounding Huntington’s research, including current clinical trials, and what it means to keep showing up with love, courage, and honesty when there are no easy answers. To learn more about Mind What Matters or to support our mission [https://www.wearemindwhatmatters.org/donate] head to our website [https://www.wearemindwhatmatters.org/]. Connect with us on Instagram [http://instagram.com/mindwhatmatterspodcast] | Facebook [https://www.facebook.com/mindwhatmattersnonprofit] | YouTube [https://www.youtube.com/watch?v=liWZrZj74lo&ab_channel=MindWhatMatters] ----------------- Mind What Matters is produced by the team at Palm Tree Pod Co.  [https://www.palmtreepodco.com/]

What Frontotemporal Dementia Really Looks Like with Beth Jones

This week on Mind What Matters, Elizabeth Humphreys and Nikki DeLoach sit down with caregiver, advocate, and podcast host Beth Jones for an honest conversation about frontotemporal dementia, isolation, and what happens when your parent slowly becomes someone you no longer recognize.  Beth shares the story of her mom’s early-onset FTD diagnosis at just 65 years old, including the subtle personality changes that first raised concern, the years spent searching for answers, and the overwhelming loneliness that followed after diagnosis. Together, Liz, Nikki, and Beth talk about the reality many caregivers experience but rarely discuss openly: feeling dismissed before diagnosis, navigating a healthcare system that offers little guidance, and trying to hold onto yourself while watching someone you love slowly change. They also explore the importance of community, practical planning, caregiver mental health, and why finding people who truly understand your experience can change everything. This episode is deeply personal, validating, and full of the kind of honesty caregivers often need most. To learn more about Mind What Matters or to support our mission [https://www.wearemindwhatmatters.org/donate] head to our website [https://www.wearemindwhatmatters.org/]. Connect with us on Instagram [http://instagram.com/mindwhatmatterspodcast] | Facebook [https://www.facebook.com/mindwhatmattersnonprofit] | YouTube [https://www.youtube.com/watch?v=liWZrZj74lo&ab_channel=MindWhatMatters] ----------------- Mind What Matters is produced by the team at Palm Tree Pod Co.  [https://www.palmtreepodco.com/]

How One Caregiver Is Rethinking ALS, Alzheimer’s & Healthcare with Indu Navar

This week on Mind What Matters, Elizabeth Humphreys and Nikki DeLoach sit down with entrepreneur, technologist, and healthcare innovator Indu Navar for one of the most eye-opening conversations the podcast has had to date.  After losing her husband Peter to ALS, Indu found herself confronting a healthcare system that felt outdated, disconnected, and devastatingly slow. Instead of walking away from that experience, she decided to challenge the system itself. Indu shares how her background in technology, AI, and entrepreneurship led her to create a new model focused on patient-driven research, faster collaboration, and better connections between caregivers, researchers, clinicians, and pharmaceutical companies. Together, Liz, Nikki, and Indu unpack the deep frustrations families experience during diagnosis, why so many caregivers feel powerless inside healthcare systems, and how innovation could radically change the future of diseases like ALS and Alzheimer’s. This conversation is emotional, deeply personal, and ultimately hopeful. It’s about refusing to accept “this is just how it’s done” when families’ lives are on the line. To learn more about Mind What Matters or to support our mission [https://www.wearemindwhatmatters.org/donate] head to our website [https://www.wearemindwhatmatters.org/]. Connect with us on Instagram [http://instagram.com/mindwhatmatterspodcast] | Facebook [https://www.facebook.com/mindwhatmattersnonprofit] | YouTube [https://www.youtube.com/watch?v=liWZrZj74lo&ab_channel=MindWhatMatters] ----------------- Mind What Matters is produced by the team at Palm Tree Pod Co.  [https://www.palmtreepodco.com/]

The Caregiving Crisis No One Can Ignore Anymore

This week on Mind What Matters, Elizabeth Humphreys and Nikki DeLoach have a deeply personal and urgent conversation about why caregiving can no longer be treated as an individual family issue, because it has become a national crisis.  Drawing from their own experiences caring for loved ones, Liz and Nikki talk honestly about the financial devastation, emotional isolation, burnout, and impossible decisions so many caregivers are facing behind closed doors every single day. They also open up about why they believe policy, legislation, and community action have to become part of the caregiving conversation moving forward. From navigating dementia care and healthcare systems to advocating for families who feel unseen and unsupported, this episode is both deeply emotional and incredibly practical. It’s a conversation about why caregivers need more than awareness, they need action, resources, and a system that actually works. Liz and Nikki also share why they are encouraging families to start speaking up, sharing their stories, and asking harder questions about what support for caregivers should really look like in this country. To learn more about Mind What Matters or to support our mission [https://www.wearemindwhatmatters.org/donate] head to our website [https://www.wearemindwhatmatters.org/]. Connect with us on Instagram [http://instagram.com/mindwhatmatterspodcast] | Facebook [https://www.facebook.com/mindwhatmattersnonprofit] | YouTube [https://www.youtube.com/watch?v=liWZrZj74lo&ab_channel=MindWhatMatters] ----------------- Mind What Matters is produced by the team at Palm Tree Pod Co.  [https://www.palmtreepodco.com/]

Raising Resilient Kids Through Adversity with Leland Vittert

This week on Mind What Matters, Elizabeth Humphreys and Nikki DeLoach sit down with journalist and author Leland Vittert for a powerful conversation about a different kind of caregiving, the kind that shapes a child’s entire life. Leland shares the story behind his book Born Lucky, opening up for the first time about growing up with an autism diagnosis that was never discussed, the challenges he faced in school, and the role his father played in helping him navigate a world that didn’t always understand him. Together, they explore what it looks like to raise a child through adversity, not by removing the hard things, but by walking alongside them through it. From resilience and discipline to unconditional love and long-term impact, this conversation offers a deeply personal look at how caregiving in childhood can shape who someone becomes. Liz and Nikki also reflect on their own experiences as parents, the emotional weight of raising children through challenges, and the balance between protecting your child and preparing them for the world. This episode is a reminder that even when it doesn’t feel like it in the moment, the love, effort, and consistency caregivers pour into their children can have a lasting and life-changing impact. To learn more about Mind What Matters or to support our mission [https://www.wearemindwhatmatters.org/donate] head to our website [https://www.wearemindwhatmatters.org/]. Connect with us on Instagram [http://instagram.com/mindwhatmatterspodcast] | Facebook [https://www.facebook.com/mindwhatmattersnonprofit] | YouTube [https://www.youtube.com/watch?v=liWZrZj74lo&ab_channel=MindWhatMatters] ----------------- Mind What Matters is produced by the team at Palm Tree Pod Co.  [https://www.palmtreepodco.com/]