FSHD Straight Talk with Tim Hollenback

170: The Calm in the Storm: Veronika Hahn

Veronika Hahn, like many in the FSHD community, is a life-long athlete who refuses to let FSHD steal her joy. In this episode, Hahn discusses her passion for extreme, endurance athletics including the Braveheart Run, Spartan Sports, and even training for her job as an Anesthesiologist. From her dedicated mindset to the details of her recent competition, Hahn discusses her perspective on life with FSHD: we have to live our lives with it because it’s always there, but it is NOT a given that FSHD will take away all your abilities or any specific abilities. No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.  On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.  If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.  Email: FSHDRadio@FSHDSociety.Org [FSHDRadio@FSHDSociety.Org]  You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!

171: Tiny Desk Concert with Gracie Caggiano

In our first NPR-style Tiny Desk Concert, Gracie Caggiano joins Tim to perform two of her songs and discuss life as a singer-songwriter living with FSHD. Based in Kansas City, Caggiano’s vocals are ethereal and haunting, her guitar tuned alternatively, every aspect of her process embodying her disability. In addition to adapting her singing and playing to the ways FSHD has changed her body, Caggiano pushes venues in her area to be more inclusive, as concert venues rarely provide ramps and other accommodations for attendees or performers. From hopes for a chance to tour, to the adaptable beauty and vulnerability of each performance, this interview with Gracie is not one to skip.  This episode opens with “Dust” and also features “Petal” written and performed by Gracie Caggiano with videos shot by her partner.  Catch Gracie performing live at Sk8bar, recordBar, and Manor Fest. Listen to her music on Spotify, Soundcloud, and Bandcamp, and follow her on Instagram.  * Website: https://www.graciecaggiano.com/ [https://www.graciecaggiano.com/]  * Instagram: @graciecaggiano  * Bandcamp: https://graciecaggiano.bandcamp.com/album/i-cant-be-anything-but-human [https://graciecaggiano.bandcamp.com/album/i-cant-be-anything-but-human]  No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.  On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.  If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.  Email: FSHDRadio@FSHDSociety.Org [FSHDRadio@FSHDSociety.Org]  You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!

169: Set Your Face Like Flint, but Keep Your Masculinity Soft, Reflections with Ryan Olson

This week, Ryan Olson, a mechanic turned web designer and programmer, joins Tim for a nuanced discussion about life after diagnosis,  finding community support, and maintaining your masculinity as your muscles deteriorate. Both men discuss their career shifts from physical to less physical jobs and how this affected their ability to relate to other men and their own “manliness.” Reflective, Ryan discusses how faith helped him overcome isolation, body and masculinity issues, and inspired his recent shift to app design. As Ryan learned through his faith, “Set your face like flint,” remain strong emotionally, but allow your masculinity to soften, as it creates room for others.  Connect with Ryan on Instagram: @heythatryan  Check out his Linktree: https://linktr.ee/thatryan [https://linktr.ee/thatryan]  Learn more and join the waiting list for Flint: an app designed to help Christian men build daily discipline. Flint is a daily mission briefing — not a devotional app. Scripture. Consistency. Covenant. Built to forge the man you're called to be.  Website: https://thatryan.com/apps/flint/ [https://thatryan.com/apps/flint/]  No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.  On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.  If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.  Email: FSHDRadio@FSHDSociety.Org [FSHDRadio@FSHDSociety.Org]  You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!

167: Introducing the High 5 Challenge with Jack Gerblick and Nick & Martha Logan

Introducing the High 5 Challenge, an awareness and fundraising campaign created and led by folks living with facioscapulohumeral muscular dystrophy (FSHD). The campaign seeks to increase awareness of FSHD’s existence and it effect on muscles, specifically, the inability to raise your arm to give a high five. In this episode, Tim meets with challenge founder Jack Gerblick to talk about the idea behind the challenge and how to participate. Jack and Tim are joined by Nick Logan, an actor known for Boots (Netflix) and the challenge’s greatest hype man as Nick raises awareness and funds to cure FSHD, which affects his mother Martha. Inspired? Join the FSHD High 5 Challenge via the steps below! How to Participate 5 steps is all it takes to fundraise and raise awareness about FSHD. Will you join us? 1. Donate today: $5, $15, $50 2. Post to social media: #HighFiveChallenge 3. Tag 5 friends in your post. 4. Include the donation link in your post. 5. Like and share posts from fellow High 5 participants!  Donation Link: www.fshdsociety.org/high5 [http://www.fshdsociety.org/high5]  No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.  On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.  If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.  Email: FSHDRadio@FSHDSociety.Org [FSHDRadio@FSHDSociety.Org]  You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!

166: A Lifetime on the Course: Maintaining His Passion Through Adaptive Golf with Justin Vanlanduit

Justin aka TurfTank returns to the podcast for an engaging conversation about adaptive sports and maintaining your athletic passions as FSHD progresses. A life-long golfer and former Course Superintendent, Justin shares the story of his return to golf via adaptive sports, after FSHD took him, temporarily, off the course. Justin also discusses starting The TurfTank Foundation to help fund research into FSHD and additional forms of muscular dystrophy.  * Learn more about The TurfTank Foundation: https://theturftankfoundation.org/about-us/ [https://theturftankfoundation.org/about-us/]  * Learn more about US Disability & Adaptive Golf (USDGA): https://www.usdgagolf.org/ [https://www.usdgagolf.org/] No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.  On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.  If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.  Email: FSHDRadio@FSHDSociety.Org [FSHDRadio@FSHDSociety.Org]  You can find new episodes on YouTube and Facebook. You can also listen to the episode on your favorite podcast app. Subscribe on YouTube or your podcast app to make sure you never miss an episode!