Podcast appearances and mentions of sean baumstark

As a clinical coordinator at Children's Hospital of Philadelphia (CHOP), Jen Farmer gained years of experience designing and operating clinical trials. Now as the CEO at the Friedreich's Ataxia Research Alliance (FARA) she uses that experience to design effective trials for the Friedreich's ataxia (FA) community - and she nicely puts Sean in his place when she states "the rules are there for your safety". Jen shares the principles that guide clinical trials and a few tips for those who choose to participate. FARA - curefa.org

As a clinical coordinator at Children's Hospital of Philadelphia (CHOP), Jen Farmer gained years of experience designing and operating clinical trials. Now as the CEO at the Friedreich's Ataxia Research Alliance (FARA) she uses that experience to design effective trials for the Friedreich's ataxia (FA) community - and she nicely puts Sean in his place when she states "the rules are there for your safety". Jen shares the principles that guide clinical trials and a few tips for those who choose to participate. FARA - curefa.org

Key Topics: What is Sean and Kyle's mission that led up to the launch of the Podcast (01:26) With a diagnosis like FA, how did you react and respond to the news (2:53) Living with FA, what does life look like for Sean and Kyle (5:17) How is the charity Determinence supporting the community (6:19) What made podcasting the right medium to add to the brand (9:38) Starting a podcast with a big mission in mind (12:26) How has creating a community help support the Podcast (14:40) Starting a podcast isn't always easy, what challenges did they find along the way (16:40) Does having a non-profit connected to your podcast help (18:50) Biggest advice Sean and Kyle have for others looking to start a Cause focused podcast (20:17) Looking back, what are some of the best memories (21:45) Can podcasting be a self-less exercise of our time (24:33) The best piece of advice for others who are focused on moving a cause forward (25:40) Website link: https://twodisableddudes.com/ (https://twodisableddudes.com/) Charity: https://determinence.com/ (Determinence) https://determinence.givingfuel.com/general-donation-page) (Donation) Social Links Twitter: https://twitter.com/2ddpodcast (2DDPodcast) Facebook: http://facebook.com/TwoDisabledDudes (Two Disabled Dudes) Facebook: https://www.facebook.com/Determinence/ (Determinence) Instagram: http://instagram.com/2ddpodcast (2DDPodcast) Instagram: https://www.instagram.com/determinence/ (Determinence) Thanks for Listening! Be sure to subscribe onhttps://itunes.apple.com/us/podcast/causecasts/id1398644299?mt=2 ( Apple),https://www.google.com/podcasts?feed=aHR0cDovL2ZlZWRzLnBvZGlhbnQuY28vY2F1c2VjYXN0cy9yc3MueG1s ( Google),https://open.spotify.com/show/3hmQQrfFDPznEqEAEeRVm8 ( Spotify), https://music.amazon.com/podcasts/67ea3876-ad03-4d6f-814c-c5395544f5c6/Causepods?ref=dm_wcp_podcast_link_th (Amazon), or wherever you get your podcasts. And feel free to drop us a line at mathew@causepods.org. Follow Mathew on Social Media to stay up to date on Causepods – https://www.facebook.com/MathewPassy (Facebook) |https://twitter.com/MathewPassy ( Twitter) |https://www.instagram.com/mathewpassy/ ( Instagram) |https://www.linkedin.com/in/mathewpassy/ ( LinkedIn) For help, resources, and community support, please join thehttps://www.facebook.com/groups/causepods ( Causepods Facebook Group) if you are already producing podcasts for a cause or are thinking about launching one. And if you would like to be a guest on Causepods, please fill out this form and schedulehttps://bookme.name/thepodcastconsultant/lite/causecast-podcast-booking ( your chat here).

ONCE UPON A GENE - EPISODE 045 Two Disabled Dudes - Kyle Bryant and Sean Baumstark When I became a part of the rare disease community after Ford was born, I didn't feel like I had any community at all. After Ford was born, I felt less connected to my friends and I sought out a new community through podcasts because hearing stories made me feel connected. Sean Baumstark and Kyle Bryant, the hosts of Two Disabled Dudes podcast, both have Friedreich’s ataxia (FA). They have been an impactful resource in my journey and I'm so excited they're joining me. EPISODE HIGHLIGHTS Can you tell us how you became friends and connected as podcasters? We met through cycling, raising awareness and did a couple bike rides together, including The World’s Toughest Bike Race - Race Across America (RAAM). It starts in San Diego, California and ends in Annapolis, Maryland. A documentary crew followed us and that experience really brought us together.  What is FA? Friedreich’s ataxia (FA) is a rare neuromuscular disease that affects muscle coordination from the toes to the fingertips. It also has symptoms of scoliosis, diabetes, vision loss, hearing loss and life-shortening heart complications. It's a rare disease that affects about 1 in 50,000 people. The condition is dual recessive so both parents can carry the damaged gene, but there's no warning indicators that it will affect the children. The average diagnosis age is 5-15 years old.  Can you share the background of The Ataxian? The film is our race against time in the Race Across America. It's relay style and we had 4 cyclists. The team has 9 days to get from the west to the east coast with no time to stop. We used this race as an opportunity to call attention to FA and raise awareness about life in the rare disease world. Everyone on the team had one mission- to finish before the clock stopped.  Sean, tell us about your organization, Determinence. After being diagnosed, I started doing day hikes with friends to think, talk and wrestle with the new outcomes we thought life was going to bring. It was on one of these hikes that we realized a lot of other people in my community at that time were inspired because they knew I didn;t walk well and struggled with hiking and climbing. People were inspired to get out, which turned into a 5K, then a 10K and eventually a half marathon. This idea of helping people accomplish something physically challenging for them was the driving inspiration behind Determinence. Determinence is a non profit I founded with a mission to help people in the world of disability to climb mountains and cross finish lines. Supporters can donate to the cause or get involved with a team.  Kyle, tell us about your book, Shifting Into High Gear. All of my cycling adventures are documented through blog posts, articles and the documentary. My first ride from San Diego, California to Memphis, Tennessee wasn't documented anywhere so I worked with a writer to publish the book, Shifting Into High Gear. It was an amazing process, thinking about my experience, what it meant to me and what it may mean to someone else who reads my story. LINKS AND RESOURCES MENTIONED The World’s Toughest Bike Race - Race Across America (RAAM) https://www.raceacrossamerica.org/ Two Disabled Dudes podcast https://twodisableddudes.com/ The Ataxian http://theataxianmovie.com/ Determinence https://determinence.com/ Shifting Into High Gear https://kyleabryant.com/ TUNE INTO THE ONCE UPON A GENE PODCAST Spotify Apple Podcasts Stitcher Overcast CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/

Friedreich's ataxia (FA) is a rare disease and is often misunderstood by those who are not affected by it. This episode explores the ways to talk about FA with those who may not be familiar with the condition. Guest hosted by Kyle Bryant and Sean Baumstark of the Two Disabled Dudes podcast.

People living with Friedreich's ataxia (FA) sometimes have difficulty with daily activities. This episode dives into the many life hacks that people living with FA and their caregivers have instituted into their daily lives. Guest hosted by Kyle Bryant and Sean Baumstark of the Two Disabled Dudes podcast.

This introductory episode of FA Talks welcomes some individuals living with FA and their caregivers as they talk about their experiences with Friedreich's ataxia. Guest hosted by Kyle Bryant and Sean Baumstark.

KCBS Radio afternoon anchor and A2A founder Jeff Bell spotlights Sean Baumstark, who at 25 was diagnosed with Friedreich’s Ataxia (FA), a rare progressive disease that causes nerve damage and affects muscle control, speech and more. In 2013 Sean founded de:terminence (determination and resilence), a non-profit with the mission of helping others live beyond a life changing diagonis by facilitating competitive sports like cycling, mountain climbing and running. Sean’s participation in an extremely challenging cycling event is featured in a documentary called The Race Across America.

KCBS Radio afternoon anchor and A2A founder Jeff Bell spotlights Sean Baumstark, who at 25 was diagnosed with Friedreich’s Ataxia (FA), a rare progressive disease that causes nerve damage and affects muscle control, speech and more. In 2013 Sean founded de:terminence (determination and resilence), a non-profit with the mission of helping others live beyond a life changing diagonis by facilitating competitive sports like cycling, mountain climbing and running. Sean’s participation in an extremely challenging cycling event is featured in a documentary called The Race Across America.

“The Ataxian” follows Kyle Bryant, a charismatic Californian with Friedreich’s ataxia, whose ability to walk and speak is impaired, as he tirelessly works to raise awareness and funds for research for the neuromuscular disorder he was diagnosed with at age 17, Friedreich’s ataxia, a little-known, progressive, fatal disease, that has no cure. Its onset usually occurs in adolescence and lifespan is roughly the age of 30. Kyle says he wants “to do something crazy!” and pulls together a team of four bicyclists — himself (on a recumbent bike) and Sean Baumstark, a friend who also has the disease, along with two friends who happen to be stellar athletes — to take part in Race Across America, an annual competition that covers 3,000 miles in nine days traveling from Oceanside, CA to Annapolis, MD. “The Ataxian” takes its viewers on a journey of inspiration, beauty, even euphoria. But its lasting contribution is in making the world a little more familiar with this disease, and a little less lonely for the families struggling against it.