0.75x 1x 1.25x 1.5x 2x 0:0000:42:16 014 – RAAM Crew Chief Mike Bryant (Kyle’s Dad) Apple PodcastsGoogle PodcastsPlayer EmbedShare Leave a ReviewListen in a New WindowDownloadSoundCloudStitcherSubscribe on AndroidSubscribe via RSSSpotify Kyle’s Dad, Mike Bryant joins us to talk about Team FARA in Race Across America and what it took to get the team safely across…

0.75x 1x 1.25x 1.5x 2x 0:0000:48:20 013 – Our #1 Advice: Build Community Apple PodcastsGoogle PodcastsPlayer EmbedShare Leave a ReviewListen in a New WindowDownloadSoundCloudStitcherSubscribe on AndroidSubscribe via RSSSpotify In this episode, Kyle & Sean talk about how building community has helped them and how it could help YOU. “No man is an island…,” as John…

0.75x 1x 1.25x 1.5x 2x 0:0000:54:34 012 – Matt Fritsch – The Spinal Cord Injury (SCI) Community Apple PodcastsGoogle PodcastsPlayer EmbedShare Leave a ReviewListen in a New WindowDownloadSoundCloudStitcherSubscribe on AndroidSubscribe via RSSSpotify   “To hear from and learn from people who are in the same position…there’s nothing that compares to it.”   A lot of…

0.75x 1x 1.25x 1.5x 2x 0:0000:42:02 011 – Ron Bartek Part 2 – Collaboration Apple PodcastsGoogle PodcastsPlayer EmbedShare Leave a ReviewListen in a New WindowDownloadSoundCloudStitcherSubscribe on AndroidSubscribe via RSSSpotify As promised, here is the second half of our interview with Ron Bartek, president and cofounder of the Friedreich’s Ataxia Research Alliance, or FARA. Please note…

0.75x 1x 1.25x 1.5x 2x 0:000:35:10 010 -Adaptive Equipment Grants – Ataxian Athlete Initiative Apple PodcastsGoogle PodcastsPlayer EmbedShare Leave a ReviewListen in a New WindowDownloadSoundCloudStitcherSubscribe on AndroidSubscribe via RSSSpotify The idea for the Ataxian Athlete Initiative (AAI) adaptive cycling equipment grant program came when Kyle received a grant from the Challenged Athletes Foundation, which he…

0.75x 1x 1.25x 1.5x 2x 0:0000:31:47 009 – Ron Bartek, Co-Founder and President, Friedreich’s Ataxia Research Alliance (FARA) Apple PodcastsGoogle PodcastsPlayer EmbedShare Leave a ReviewListen in a New WindowDownloadSoundCloudStitcherSubscribe on AndroidSubscribe via RSSSpotify We are honored to interview Ron Bartek, president and co-founder of the Friedreich’s Ataxia Research Alliance (FARA). Since both of us have…

0.75x 1x 1.25x 1.5x 2x 0:0000:40:54 008 – Paul Melmeyer, Associate Director of Public Policy, NORD Apple PodcastsGoogle PodcastsPlayer EmbedShare Leave a ReviewListen in a New WindowDownloadSoundCloudStitcherSubscribe on AndroidSubscribe via RSSSpotify “Alone we are rare. Together we are strong.” –National Organization for Rare Disorders In this episode we are joined by Paul Melmeyer, Associate Director of…

0.75x 1x 1.25x 1.5x 2x 0:0000:26:42 007 – Interview with Max Bronstein of the EveryLife Foundation Apple PodcastsGoogle PodcastsPlayer EmbedShare Leave a ReviewListen in a New WindowDownloadSoundCloudStitcherSubscribe on AndroidSubscribe via RSSSpotify   “We have a big innovation gap in this country when it comes to rare disease therapies. 7,000 diseases and only roughly 300 treatments…

0.75x 1x 1.25x 1.5x 2x 0:000:46:12 006 – Nicole Boice, CEO Global Genes Apple PodcastsGoogle PodcastsPlayer EmbedShare Leave a ReviewListen in a New WindowDownloadSoundCloudStitcherSubscribe on AndroidSubscribe via RSSSpotify   The knowledge and diagnosis of a rare disease can be a frightening time in anyone’s life. However, through education and through connecting to others, support –…

0.75x 1x 1.25x 1.5x 2x 0:000:22:38 005 – Rare Disease Day Special Guests Apple PodcastsGoogle PodcastsPlayer EmbedShare Leave a ReviewListen in a New WindowDownloadSoundCloudStitcherSubscribe on AndroidSubscribe via RSSSpotify In the rare disease community, strength is in unity and supporting one another. February 28th is globally recognized as Rare Disease Day. Since Friedreich’s ataxia (FA), the…