This is what Awareness Looks Like

Awareness isn’t a ribbon or a one-month campaign. It’s not a buzzword or a checklist item. For us, awareness is a lifeline. It’s the quiet, middle of the night moment when someone newly diagnosed finds our page and finally sees their experience reflected back at them. It’s when a teenager, frustrated by being misdiagnosed for years, shows one of our Instagram posts to their doctor and is finally heard. It’s when a parent goes down a Google rabbit hole and instead of fear, finds something that makes them feel held. That is awareness — not as a marketing effort, but as a human one.

We don’t raise awareness for visibility’s sake. We do it because people are falling through the cracks. Because there are patients whose stories are misunderstood or dismissed. Because there are researchers who don’t know this condition exists — and medical professionals who don't have the tools to talk about it. Awareness is how we interrupt that silence. We share stories, host interviews, build tools, and post visual guides because someone out there needs to see that LVNC is real, complex, and deeply human. We believe awareness should not just exist — it should move people.

Real Voices, Real Impact

Expect to see a collection of patient and specialist quotes about the functionality of our organization once operations begin in July of 2025. For now, all posted information will be on our Blog.

Want to share your story? Send us a direct message to our Instagram @nexusheartfoundation.

The Tools We Use to Make Noise

We meet people where they are — not just in hospitals, but on their phones, in their classrooms, in conversations that weren’t happening five years ago.

Platforms for Change:

  • Instagram
    Story campaigns on topics like:
    – “When I First Felt Something Was Wrong”
    – “What I Wish I Knew After Diagnosis”
    – “Talking to Your Cardiologist: A Guide”

  • The Blog & Glossary
    Written in plain language, but never dumbed down. Designed to help people speak the language of their condition — and advocate for their own care. (Coming Soon)

  • Interviews & Q&As
    Thoughtful conversations with specialists, patients, and caregivers. No clickbait. No easy answers. Just nuance, honesty, and clarity. (Coming Soon)

  • All of these resources will be posted on our Blog once created.

Awareness in Motion — What We’re Doing

Awareness isn't static. Here's how we're pushing forward:

  • LVNC Slide Series (Coming Soon)
    To be seen by over 25,000 users and saved by patients to show their doctors

  • Specialist Directory Project (Coming Soon)
    We’ve identified every major LVNC specialist in the U.S., and made it public — so patients stop getting bounced between clinics.

  • Partner Spotlights (Coming Soon)
    Collaborations with groups like the Children’s Cardiomyopathy Foundation and HFSA to amplify accurate LVNC info.

  • Local Activation Kits (Coming Soon)
    Printable guides + materials for people to bring to hospitals, schools, and local health events

How You Can Help (Without Donating a Cent)

Not everyone has money to give, but you can still move this mission forward.

🧠 Learn the terms.
💬 Share a post.
📢 Submit your story.
👩‍⚕️ Recommend a specialist we can add to the locator.
👥 Sign up to volunteer for digital content or outreach.
🎙 Invite us to speak at your school, hospital, or community group.

Every single action, even just resharing one post, helps us make LVNC visible.

The Future We’re Building

What we’re doing next (and how you can be part of it):

  • 2025 → Launching a moderated digital forum for patients and families

  • Fall 2025 → Rolling out scholarships for young people traveling for specialist care (Pending Donations)

  • Early 2026 → Publishing the first patient-authored zine on living with LVNC

  • Ongoing → Expanding our interview series to include perspectives from nurses, athletic trainers, and genetic counselors.

This is what awareness looks like. It’s slow. It’s personal. It’s powerful. And it’s growing.
If you’ve ever felt unheard, overlooked, or overwhelmed by your diagnosis — you’re the reason we’re doing this.

📲 Follow @nexusheartfoundation
✍️ Share your story
🧭 Help someone find their way