Sebastian’s Hope Foundation was born from the life and legacy of Sebastian, a joyful, courageous boy with a deep love for the ocean, adventure, and connection.

Diagnosed with Spinocerebellar Ataxia Type 2 (SCA2) at the age of 11, Sebastian faced a rare and progressive neurological condition that profoundly changed his body, but never his spirit. His resilience, curiosity, and unwavering joy inspired not only those closest to him, but a growing community committed to carrying his light forward.

Sebastian’s Hope Foundation is a nonprofit organization dedicated to making rare diseases visible and ensuring that children and families affected by neurodegenerative conditions are seen, supported, and never alone.

Our mission is to:
• Raise awareness of SCA2 and other rare diseases.
• Support and connect families and caregivers.
• Fund research that advances treatments and brings us closer to a cure.

Beyond awareness, we are committed to building a compassionate ecosystem,  one that centers dignity, inclusion, and hope, while fostering collaboration across healthcare providers, researchers, institutions, and community partners.

Sebastian’s story lives on through action, advocacy, and love in motion.

Whether you are here to learn, support, partner, or walk alongside us, you are part of a growing circle of hearts united by purpose and possibility.

Together, We Carry Hearts on Wheels — and Hope Forward💙

Sebastian's Hope Foundation

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Sebastian's Hope Foundation

Org chart

Teams

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