Understanding Hypoplastic Left Heart Syndrome
Learn about ChevySantana's condition and how you can help
What is Hypoplastic Left Heart Syndrome?
Understanding the rare heart condition affecting ChevySantana
Hypoplastic Left Heart Syndrome (HLHS) is a rare and complex congenital heart defect in which the left side of the heart is critically underdeveloped. This results in insufficient blood pumping through the left side of the heart to support the rest of the body.
A baby born with HLHS will need surgery soon after birth. HLHS treatment involves a series of three surgeries performed in staged reconstruction over time:
- 1The Norwood Procedure
Performed shortly after birth, this surgery creates a new aorta and connects it to the right ventricle.
- 2The Glenn Procedure
Typically performed when the child is 4-6 months old, this surgery connects the superior vena cava directly to the pulmonary artery.
- 3The Fontan Procedure
Usually performed between 18 months and 3 years of age, this final surgery connects the inferior vena cava to the pulmonary artery.
ChevySantana's Heart Journey
A story of extraordinary courage and resilience
From the moment he was born, ChevySantana Johnson has defied the odds as an extraordinary young boy, and is now a 5-year-old young warrior living with Hypoplastic Left Heart Syndrome (HLHS).
ChevySantana has undergone all three of his staged open-heart surgeries - including his final surgical repair, and continues to show incredible strength, joy, and resilience in the face of unimaginable challenges which limit his day to day activities.
But his journey isn't over. ChevySantana will ultimately require a lifesaving heart transplant as he reaches his young adult years — a medical intervention estimated to cost $1.5 million, including transplant preparation, lifelong medications, and post-operative care.
Surgeries Completed
ChevySantana has successfully undergone all three staged surgeries: the Norwood, Glenn, and Fontan procedures.
Current Challenge
Despite successful surgeries, ChevySantana faces daily limitations and will eventually need a heart transplant.
Community Support
Your support helps fund ChevySantana's future heart transplant and ongoing care needs.
The ChevySantana Heart Foundation
Raising awareness and funds for heart health research and education
Our Goal
Raise awareness and funds for heart health research and education through a community-driven 5K marathon.
Heart Strong 5K
Our flagship event brings together runners, walkers, and supporters from all walks of life to raise funds for ChevySantana's future heart transplant and ongoing care.
Through community participation, sponsorships, and donations, we aim to reach our $1.5 million goal while promoting heart health awareness.
Event Phases
- 1Pre-Launch: Planning, permits, team setup, sponsorships
- 2Launch & Promotion: Branding, marketing, early registration
- 3Lead-Up: Participant engagement, volunteer training
- 4Race Week: Packet pickup, final preparations
- 5Post-Race: Thank you campaign, impact reporting
Heart Strong 5K Countdown
Join us on June 3, 2023 at Riverside Park
Heart Strong 5K: Detailed Plan
Our comprehensive approach to making the event a success
PHASE 1: Pre-Launch (2-3 Months Before Event)
Event Planning & Permits
- Define event date, time, and location
- Secure permits and insurance
- Partner with city officials, police, and medics
Team Setup
- Assign leads for logistics
- Assign leads for sponsorship
- Assign leads for marketing
- Assign leads for volunteers
- Assign leads for registration & tech
Sponsorship & Partners
- Create sponsorship packages (Gold, Silver, Bronze)
- Approach local businesses, gyms, hospitals
- Secure hydration sponsors (e.g. water, energy drinks)
PHASE 2: Launch & Promotion (6-8 Weeks Out)
Branding & Marketing
- Event name: Heart Strong 5K
- Design logo, posters, T-shirts, medals
- Launch website/landing page with registration
Promotion Channels
- Social media campaign (Instagram, Facebook, TikTok)
- Press release to local media
- Email blasts to past participants & donors
- Community bulletin boards (libraries, gyms, clinics)
Early Registration Drive
- Offer discounted early-bird rates
- Highlight limited-edition race shirts
PHASE 3: Lead-Up (1 Month Out)
Participant Engagement
- Weekly training tips via email/social
- "Why I Run" participant spotlight stories
- Countdown content (e.g., "30 Days to Go!")
Volunteer Recruitment & Training
- Roles: registration desk, route marshals, water stations
- Schedule training sessions
Route & Safety Planning
- Finalize 5K route map
- Arrange signage, water stations, first aid booths
PHASE 4: Race Week & Race Day
Race Week
- Organize bib and T-shirt distribution
- Include sponsor materials and safety info
- Confirm volunteers, vendor setup, signage
- Weather contingency planning
- Confirm emergency contacts & response plan
Race Day
- Setup (start/finish line, booths, sound system)
- Volunteer check-in & station setup
- Warm-up session with music/instructor
- Start emcee announcements and countdown
- Water and cheering stations active
- Live updates and photos for social media
- Award ceremony (top finishers, fundraising teams)
PHASE 5: Post-Race Follow-Up
Thank You Campaign
- Send thank-you emails with race photos
- Tag sponsors and volunteers in social media posts
Impact Report
- Share fundraising total and foundation impact
- Testimonials from participants or beneficiaries
Survey & Feedback
- Participant and volunteer surveys
- Gather ideas for next year
Media Recap
- Blog post or video recap
- Local news coverage summary
Marketing Materials
Sample content to promote the Heart Strong 5K
Social Media Post Samples
🎉 Announcement Post
🏃♀️💓 Lace up your sneakers and join us for the Heart Strong 5K — a community run for a cause! 🗓️ [Date] 📍 [Location] Your stride can save lives. Funds raised will support heart health education and research. ✨ Register now: [Website link] #HeartStrong5K #RunForTheHeart #HeartHealthMatters
Visual: Bold graphic with runners, heart iconography, date/location overlay, Heart Foundation logo
⏳ Countdown Post (1 Week Out)
Only 7 days until we hit the pavement for heart health! Have you picked up your race packet yet? Let's make every heartbeat count. 💪❤️ #HeartStrong5K #1WeekToGo #HealthyHearts
Visual: Countdown clock with overlay text: "7 Days to Go"
🥇 Race Day Hype Post
Today's the day! Let's run, walk, and cheer for a heart-healthy future 💓 📍 [Location] 🕗 Check-in opens at [Time] 🏁 Race starts at [Start Time] #HeartStrong5K #RaceDay #RunForTheHeart
Thank You Email (Post-Race)
Subject: Thank You for Making Every Step Count ❤️
Hi [First Name],
From the bottom of our hearts — thank you for being a part of the Heart Strong 5K!
Because of your energy, support, and dedication, we raised over $[amount] to fund lifesaving heart health programs. Whether you ran, walked, volunteered, or cheered, you helped make a difference.
📸 Photos from race day: [Photo Gallery Link]
📝 We'd love your feedback: [Survey Link]
Stay tuned for more events and ways to support. Until next time, keep your heart strong! 💪
With gratitude,
[Your Name]
Heart Strong 5K Team
[Contact Info]
Sponsorship Deck Outline
Slide 1: Cover
- Event logo
- Title: "Sponsorship Opportunities: Heart Strong 5K"
- Date/Location
Slide 2: About the Event
- What is Heart Strong 5K
- Mission of the Heart Foundation
- Expected attendance
Slide 3: Why Sponsor?
- Local community visibility
- Positive brand alignment
- Direct engagement with 500+ active community members
- Recognition across marketing materials
Slide 4: Sponsorship Tiers
- Gold Sponsor – $5,000+
- Logo on banner, shirts, website
- Speaking opportunity
- Feature in press and social media
- Silver Sponsor – $2,500
- Logo on shirts, signage, website
- Social media shoutout
- Bronze Sponsor – $1,000
- Logo on website
- Event-day booth
Slide 5: In-Kind Donations Welcome
- Water, snacks, raffle prizes, printing, etc.
- Recognition on-site and online
Slide 6: Contact Us
- Your name + email/phone
- Deadline for sponsor confirmation
- Call to action: "Join us in strengthening our community's heart health!"
Join ChevySantana's Heart Journey
Together, we can reach our $1.5 million goal and give ChevySantana the gift of a healthy future.