Justin’s Story:
Justin Johnson was more than a boy with sickle cell disease—he was joy in motion. A bright student, a loyal friend, and a loving son, Justin met pain with courage and refused to be defined by it. He learned to listen to his body, to manage pain, and to look for the good in every day.
Yet sickle cell is relentless. It can turn ordinary moments into emergencies. Shortly before his seventeenth birthday, friends knocked on his door to play tag—no harm intended, no awareness of the risk. The sudden exertion triggered a severe crisis. Justin’s body could not
get the oxygen it needed. In minutes, the world changed. The loss was devastating—and, with understanding, preventable.
His father, Orville O. Johnson, made a vow: Justin’s story would not end in silence. He would turn pain into purpose so others could be protected. From that vow, the Justin Johnson Legacy Foundation was born. Today, we carry Justin’s light into schools, homes, and communities—teaching what sickle cell is, how to respond, and how to include and care for those living with it. Justin’s time on earth was short. His legacy will be long, saving lives through awareness, compassion, and action.
Mission
To uplift individuals, families, and communities affected by sickle cell disease and disabilities through education, advocacy, and compassionate support.
Vision
A world where health challenges never limit dignity, safety, or opportunity.
Values
- Compassion
- Respect
- Integrity
- Hope