Jason Fisher, Executive Director - Kleine-Levin Syndrome Foundation
Jason Fisher is the Executive Director of the Kleine-Levin Syndrome Foundation, a nonprofit that helps people with a rare sleep disorder that affects about 1 in a million.
Before this, Jason worked with another rare disease group because his daughter had a genetic condition. That experience helped him in his current role.
At the Kleine-Levin Syndrome Foundation, Jason works to spread awareness, fund research, and support families. He is the first paid staff member in the organization.
He builds relationships with doctors, researchers, and families while expanding programs like webinars and education.
In this episode:
- 00:00 – Welcome to the Key Relationship Management Podcast, Jason Fisher
- 00:34 – Understanding Klein Levin Syndrome: The “Sleeping Beauty” Disorder
- 02:39 – The KLS Foundation: Mission, Challenges, and Impact
- 06:36 – Expanding Programs: Conferences, Webinars, and Medical Outreach
- 12:06 – Key Relationships: Strengthening Partnerships for Greater Impact
- 17:17 – The Power of Patient Stories: Hope, Awareness, and Community
- 18:15 – Fundraising and Advocacy: Ensuring Sustainability in Tough Times
- 19:09 – Looking Ahead: The Future of KLS Research and Support
"We try to bind people together. We try to get families together as often as possible. When you're in a rare disease situation, you oftentimes think nobody else has gone through what you've gone through."
Listen, watch, or subscribe
The KRM Podcast takes you behind the scenes in real-time. Every episode is packed with tactical advice, hilarious screwups, compelling conversations, and the tools and inspiration you need to create a better life.