Episode 65 - Nothing Left to Prove: A Conversation with Kiersten Riggs

In this episode of the Quest Podcast, we chat with Kiersten Riggs, a 24-year-old rare disease advocate from Tulsa, Oklahoma, who was a varsity cheerleader when her family first heard the words Friedreich's ataxia (FA). Kiersten opens up about being diagnosed alongside her older sister, the four years she spent hiding from the FA community before becoming one of its loudest voices, and the rude encounter with a bartender that accidentally launched her advocacy career. She speaks candidly about using a mobility aid for the first time, the difference between help that empowers and help that quietly takes independence away, and what happened when she finally put a photo of her walker on her dating profile. Kiersten shares her experiences, expertise, and heartfelt perspective on diagnosis, sibling journeys, self-advocacy, and giving yourself permission to stop proving anything to anyone.

Transcript

Guests:

Kiersten Riggs is a 24-year-old advocate for the rare disease community, living with Friedreich's ataxia (FA), and based in Tulsa, Oklahoma. She works in social media at Bionews, where she uses her platform to raise awareness and understanding of rare diseases and connects content creators with paid opportunities to tell their stories. Kiersten is passionate about her work because she believes awareness leads to stronger communities and continued progress toward new treatments, and she loves connecting with others navigating similar journeys.

Connect with Kiersten:

Host:

Mindy Henderson is MDA's Vice President of Disability Outreach & Empowerment, Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with spinal muscular atrophy (SMA) type 2, when she was 15 months old and has been a life-long partner to MDA. Mindy is also a professional speaker and author of the book, The Truth About Things That Suck.

Connect with Mindy: