{"href":"http://player.captivate.fm/services/oembed?url=http%3A%2F%2Fplayer.captivate.fm%2Fepisode%2F02589862-f69b-4124-8a21-eacf575ad010","version":"1.0","provider_name":"Captivate.FM","provider_url":"https://www.captivate.fm","width":600,"height":200,"type":"rich","html":"<iframe style=\"width: 100%; height: 200px;\" title=\"Leaders in the Club Nobody Wanted to Join (Part 2)\" frameborder=\"0\" scrolling=\"no\" allow=\"clipboard-write\" seamless src=\"http://player.captivate.fm/episode/02589862-f69b-4124-8a21-eacf575ad010\"></iframe>","title":"Leaders in the Club Nobody Wanted to Join (Part 2)","description":"\u201cWe 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.\u201d   Amber Freed\nWe continue our discussion with guest Amber Freed, Maxwell\u2019s 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. \n\nTheir 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. \n\nWe also discuss what they have learned from each other and the others in the broader rare disease community. \n\nDonations can be made for SLC6A1 research at MilestonesforMaxwell.org \n\nDonations for GPX4 research can be made at cureGPX4.org","thumbnail_width":300,"thumbnail_height":300,"thumbnail_url":"https://artwork.captivate.fm/114c3570-d7fd-4eda-abc1-ae10576d2204/RaisingRare_Logo-2-.png"}