Connecting on Huntington’s Disease with Lauren Holder - Founder and Host of Help 4 HD Live!

Welcome to today’s episode of The Meredith Patterson Podcast.

This one is close to my heart because we’re talking about Huntington’s disease—something I have a family connection to—and we’re doing so during Suicide Awareness Month.

Suicide rates among people living with Huntington’s, or even those who’ve simply tested positive for the gene, are among the highest in the world. Today, we’re going to talk openly about this reality, about resilience, and about hope.

Joining me is someone who has dedicated her life to this mission: Lauren Holder. She is the host and producer of Help 4 HD Live!, the first international radio show for the Huntington’s community, and an advocate who has walked this path herself. Lauren, welcome.

 

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Part 1: Lauren’s Journey Into Advocacy

1. You’ve been part of the HD community for many years, both as a caregiver to your father and as someone who tested for the gene yourself. Can you share what led you to take that test so young, and how that decision shaped your journey?
   
   

2. Many of us who love someone with HD experience years of anticipatory grief—watching symptoms develop in a parent or sibling. What was that like for you as a young woman stepping into a caregiver role for your dad?
   
   

3. After time away from advocacy, you stepped into producing Help 4 HD Live! in 2018. What pulled you back into this space, and what does it mean to you personally to carry these stories forward?

 

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Part 2: Mental Health and Suicide Awareness

4. Suicide Awareness Month is such an important reminder, especially in the HD community where suicide rates can be up to 10 times higher than the national average. When you think about those numbers, how does that land for you emotionally—as both an advocate and someone personally impacted?
   
   

5. What do you believe are the biggest factors driving these high rates of depression, anxiety, and suicidal ideation in the HD population?
   
   

6. For someone who has just tested positive for the gene, that reality can feel like a heavy weight. What are the first things you think they need to hear, and what conversations should we as a community be having with them?

 

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Part 3: Staying Grounded and Positive

7. You’ve talked about the importance of self-care, even in small daily rituals. Can you share what grounds you—whether that’s time with your kids, connecting with nature, or simply giving yourself space to feel?
   
   

8. Advocacy work can be both healing and draining. How do you balance the emotional toll of telling these stories with the joy and purpose it brings you?
   
   

9. Do you ever find yourself overwhelmed by the weight of HD, and if so, what helps you shift back into hope?

 

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Part 4: Breaking Stigma and Building Community

10. Mental health still carries stigma, and in HD families, it can feel like one more thing to hide. How do you use your platform on Help 4 HD Live! to break that silence and create a judgment-free space?
    
    

11. From your perspective, what role does community—whether through support groups, peer connections, or just having someone to talk to—play in sustaining resilience?
    
    

12. What would you say to listeners who might be struggling right now—either living with HD, caring for someone, or just feeling alone in the journey?

 

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Part 5: Looking Ahead

13. You’ve said before that this work gives you purpose. When you look toward the future, what’s the vision you hold—for yourself, for Help 4 HD Live!, and for the HD community at large?
    
    

14. What gives you hope when you think about the generations who will come after us, who may be carrying this gene?

 

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Lauren, thank you for sharing your heart with us today. Your honesty, your compassion, and your commitment to keeping these conversations alive are such a gift to this community.

And to everyone listening: if you or someone you love is struggling, please know you are not alone. In the U.S., you can call or text 988 to connect with the Suicide & Crisis Lifeline. For Huntington’s-specific support, visit hdsa.org or Help 4 HD Live! at help4hd.org.

This conversation doesn’t end here—let’s keep reaching out, keep supporting one another, and keep holding on to hope.

If this episode resonated with you please share it with your community, like, subscribe, download and write a 5 star review on Apple Podcasts or Spotify. It all helps us get the word out into the world and create a positive ripple effect. 

Bliss Is Your Birthright 

Have vision for what you want and be grateful for where you are every single day. 

Thank you for listening

www.Help4HD-International.org