Adult Life and Life Long Care
For many families, rare disease caregiving does not end at childhood—it evolves.
Today, individuals with H-ABC/Tubb4A are living into adulthood. Behind each of them is often a parent—frequently middle aged —continuing to provide daily, hands-on care.
This is not short-term caregiving. It is lifelong.
As our children grow older, so do we. And with that comes a new layer of responsibility—balancing our own health, financial planning, and future uncertainty while continuing to provide the care our adult children depend on every day.
As caregivers age, new challenges emerge. We are managing our own health while continuing to support an adult child with complex needs—providing physical care, coordinating medical support, navigating financial planning and facing the difficult question of what happens when we can no longer do it alone.
While H-ABC/Tubb4A is rare, this experience is not. Across the country, millions of older adults are caring for adult children or dependents with disabilities. Our community reflects a broader reality—one that calls for greater awareness, stronger support systems, and long-term solutions.
The Foundation to Fight H-ABC is committed to supporting families through every stage of this journey. Through caregiver resources, partnerships, and advocacy, we are working to ensure that individuals with H-ABC/Tubb4A—and the families who care for them—are supported not just in childhood, but throughout adulthood.
Because caregiving doesn’t end at 18—and no family should have to navigate what comes next alone.
Technology Supporting Real Life
Through support from cloud-based technology, the Foundation to Fight H-ABC is developing digital tools designed specifically to support this stage of life.
This includes interactive, easy-to-understand educational experiences that help caregivers, extended family members, and community providers better understand H-ABC/Tubb4A and the daily realities of care. These tools are designed to reduce isolation, improve communication, and make it easier for caregivers to explain needs, coordinate support, and advocate effectively.
By making information more accessible and scalable, we are helping families move beyond day-to-day survival toward more sustainable, supported caregiving—especially for those navigating this journey later in life.
Resources for Adult Life & Caregiving
Caregiver Support
AARP Caregiving Resources
Family Caregiver Alliance
Find Help Near You
Eldercare Locator
Planning & Long-Term Care
AARP Prepare to Care Guide (see link below)
National Support Programs
Administration for Community Living
Caregiver Action Network