The Rare Hour is a weekly one-hour show airing Tuesdays at 1pm. It’s dedicated to the voices, stories, struggles, and victories inside the rare disease and special needs ommunity, with host Christopher Velona, Director of Project Sebastian. Christopher didn’t choose this journey — it chose him. His son, Sebastian, lives with Batten Disease, a rare, fatal neurological disorder that primarily affects children, causing progressive vision loss, seizures, cognitive decline, and motor skill deterioration. Sebastian's symptoms atarted at age 5; he was born in 2003. You Do the math.
Radio Show
Become A Sponsor
The Rare Hour
THE RARE HOUR
Sponsorship & Community Partnership Opportunities
Hosted by Christopher Velona
Founder of Project Sebastian | Author of The Caregiver Reset
When pharmaceutical companies overlook rare diseases, families still need answers.
A Rare Hour exists to help them find those answers today.
Every day, families caring for loved ones with rare diseases, disabilities, and complex medical conditions face challenges that most people never see. They search for resources, support, guidance, and hope while navigating a healthcare system that can often feel overwhelming and isolating.
As the father of a son living with Batten Disease, I understand this journey firsthand.
After years of advocacy through Project Sebastian, I launched A Rare Hour on KHTS Radio to create a platform where families, caregivers, professionals, and organizations can come together to share knowledge, resources, and real-world solutions that make a difference right now.
About The Rare Hour
A Rare Hour is a weekly radio program dedicated to highlighting the people, organizations, services, and resources improving the lives of individuals affected by rare diseases, disabilities, and special needs.
Each episode features meaningful conversations with:
– Caregivers and family advocates
– Healthcare professionals
– Therapists and educators
– Nonprofit organizations
– Community leaders
– Service providers
– Businesses supporting special-needs and disability communities
Our goal is simple:
To educate, connect, and empower families through information, resources, and hope.
Our Audience
A Rare Hour reaches:
– Family caregivers
– Parents of children with special needs
– Rare disease families
– Healthcare professionals
– Home health providers
– Nurses and caregivers
– Therapists and educators
– Social workers and advocates
– Community supporters
Why Partner With A Rare Hour?
Supporting A Rare Hour is more than advertising.
It is an opportunity to align your organization with a trusted platform serving families who are often overlooked and underserved.
Your partnership helps:
– Connect families with valuable resources
– Increase awareness of important services
– Highlight organizations making a positive impact
– Support educational programming
– Strengthen our caregiving and special-needs communities. Together, we can create a stronger, more informed, and more connected community.
For more information, email chris@projectsebastian.org
