Loading Episode...
Raising Rare - Raising Rare EPISODE 14, 15th August 2020
Leaders in the Club Nobody Wanted to Join (Part 2)

Leaders in the Club Nobody Wanted to Join (Part 2)

“We are in a really lonely, isolating place and none of want to be here. We are all grieving differently. I have the utmost compassion for each one of us.”  Amber Freed

We continue our discussion with guest Amber Freed, Maxwell’s Mom and CEO of SLC6A1 Connect. Sanath and Amber have both found themselves as leaders in their particular disease communities.  This is not a role they wanted to take on, they never competed for membership in this club. 

Their life experiences have prepared them to take a step forward and accept the responsibility leadership brings. We talk about the various challenges they face and how they each have their own way of leading through them. 

We also discuss what they have learned from each other and others in the broader rare disease community. 

Donations can be made for SLC6A1 research at MilestonesforMaxwell.org 

Donations for GPX4 research can be made at cureGPX4.org