OUR Pillars
Support that reaches families today, and reshapes the system tomorrow.
Meeting CHD Families in the moments that matter most.
A CHD diagnosis reshapes everything – finances, logistics, and routine day of life. Family support is the heart of what we do: practical, immediate help for families navigating hospital stays, recovery, and the long road in between. Every form of support is designed to ease the burden. Coordination is done through the hospital’s cardiac social work team.
WHAT THIS LOOKS LIKE
- Day-of-Surgery Care Packages delivered to families in the waiting rooms and cardiac ICUs – removing as much stress as possible so the only thing they need to worry about is their child.
- Housing and Travel Assistance for families relocating near specialty hospitals, often hundreds of miles from home.
- Single-Ventricle Monitoring Program Support by leveraging partnerships to provide better resources and tools for at-home monitoring.
- Holiday Gift Support for inpatient families spending the season in the hospital.
- In-Hospital Activities and Engagement for siblings, parents, and patients during long admissions.
- Inpatient Food Pantry Support so families never have to choose between staying close to their child and feeding themselves.
- Neurodevelopmental Support including ScentHeart kits, bonding-activity support, and other items to help families navigate bonding with their children in the cardiac ICU.
- Responsive Support for Unmet Needs as they emerge, because no two CHD journeys look alike.
Knowledge is the first step from fear to confidence.
A CHD diagnosis arrives with a flood of unfamiliar terminology, complex anatomy, and decisions no parent feels prepared to make. Education is one of the most powerful forms of support SHF can offer. Our education work spans plain-language resources, clinical content, and direct learning experiences for families and the broader CHD community.
WHAT THIS LOOKS LIKE
- Plain Language Resources covering common defects, surgeries, and stages of care. [In Development]
- Childhood Education Activities to help siblings and peers understand, accept, and support the CHD journey.
- Clinician Education Program to upskill non-cardiac emergency care center clinicians to be better suited to provide acute-care and escalate appropriately. [In Development]
Investing in the digital tools the CHD community is missing.
CHD care is high-stakes, high-frequency, and information-dense – yet the digital infrastructure supporting families and clinicians has barely changed in decades. Most caregivers still rely on paper folders, scattered apps, and group texts to manage what is one of the most complex medical journeys a family can face. SHF is investing in purpose-built technology for the CHD community: tools designed around how families actually live with this diagnosis, and built in partnership with the clinicians who treat it.
WHAT THIS LOOKS LIKE
- A CHD Caregiver App to act as a mobile resource to help families better navigate the cardiac ICU with confidence, decode unfamiliar terminology in real time, and reduce the cognitive load of an environment most parents are never prepared to enter. [In Development]
- Clinician Education Program to upskill non-cardiac emergency care center clinicians to be better suited to provide acute-care and escalate appropriately. [In Development]
- AI Discovery for CHD Families to explore how emerging AI capabilities can meaningfully improve daily life for families living with CHD, from information access, to caregiver support, to long-term care coordination.
Changing the system that CHD families have to navigate.
CHD is the most common birth defect in the United States, yet it remains chronically underfunded in federal research, underrepresented in public awareness, and inconsistently covered across insurance and care systems. Advocacy is how SHF works to change that. We engage at the federal, state, and local levels alongside partner organizations, clinicians, and families who like this every day to push for research funding, policy attention, and systemic recognition that CHD deserves.
WHAT THIS LOOKS LIKE
- Federal Advocacy for sustained and expanded CHD research funding.
- Policy Engagement on issues affecting CHD families – insurance coverage, caregiver protections, and care access.
- Coalition Work with partner CHD organizations to amplify shared priorities.
- Awareness Campaigns that move CHD from invisible to understood.
- Family Voice Amplification to equip CHD families to share their stories where decisions get made.
Care doesn’t end at eighteen, and neither does ours.
The ACHD & Transplant Department exists to improve the lives of adults with congenital heart disease (ACHD) who are navigating heart transplantation. We do this through community-building, financial assistance, and practical recovery support. The department seeks to reduce barriers to care, improve quality of life, and ensure that no ACHD transplant patient has to face the journey alone.
WHAT THIS LOOKS LIKE
ACHD Heart Transplant Peer-to-Peer Meetup Group
The ACHD Heart Transplant Peer-to-Peer Meetup Group provides a safe and supportive virtual space for ACHD patients who are at any phase of the heart transplant process. The meetup is facilitated by Lindsay Alano, our ACHD & Transplant Managing Director who is also an ACHD heart and liver transplant patient herself.
For the link, please email Lindsay at Lindsay.K.Alano@gmail.com
Note: This virtual meetup is intended for peer support and educational discussion only. It is not medical advice, mental health counseling, or professional healthcare. Participants should consult their own healthcare providers regarding medical concerns. By participating in a virtual meetup – you agree with the terms and conditions of our Peer Meetup Disclaimer page, found here: https://strongerheartsfoundation.com/peer-meetup-disclaimer/
ACHD Heart Transplant Welcome Home Care Package
The Welcome Home Care Package Program helps ACHD heart transplant recipients transition from hospital to home following transplantation. Recipients receive practical recovery supplies, infection prevention resources, health monitoring tools, medication management supplies, and financial assistance to help ease the burden of the first year after transplant.
Eligibility Requirements
To qualify for a Welcome Home Care Package, applicants must:
- Have (had) congenital heart disease
- Be 18 years of age or older
- Have received a heart transplant within the previous 90 days or be scheduled for discharge following transplantation
- Reside in the United States
- Complete the program application
- Certify that all information provided is accurate
Note: Preference may be given to applicants demonstrating financial need, limited support systems, or other barriers to recovery if program demand exceeds available funding. Care Packages are subject to availability.
If you are a transplant patient or part of a patient’s transplant care team, click below to access the application.
ACHD Transplant Financial Assistance Program
The ACHD Transplant Financial Assistance Program provides financial support to ACHD patients receiving heart transplant care through UC San Diego Health.
Eligibility Requirements
To qualify, applicants must:
- Be 18 years of age or older
- Have a diagnosis of congenital heart disease
- Be actively receiving heart transplant-related care through UC San Diego Health
- Be in one of the following stages:
- Transplant evaluation
- Listed for transplant
- Post-transplant recovery
- Demonstrate financial need or hardship
- Reside within the United States
- Complete the program application
- Agree to program terms and conditions
Have your caregiver, social worker, or a member of your care team complete the application today!
Note: Preference may be given to applicants demonstrating financial need, limited support systems, or other barriers to recovery if program demand exceeds available funding. Assistance is subject to fund availability.