PODCAST · health
FSHD Straight Talk with Tim Hollenback
by FSHD Straight Talk
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.
Episodes
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180: Being Funny When You Don't Feel Funny with Jim Shaughnessy
Jim Shaugnessy is looking for a girlfriend. That’s not a joke, even though he spent his life writing for late night TV including Conan O’Brien and The Tonight Show. In this candid conversation, Shaughnessy’s trademark mix of Philly frankness and not shying away from difficult topics is on…
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179: Expand Your Life: Beginning, Again & Again, with Christine Hoene
Christine Hoene is a force of nature. From windsurfing to roller pole to ice climbing, there are very few sports she hasn’t tried. Convinced by a dream in her 30s to live life to the fullest, Hoene chose to try a new sport, every year, for an entire year. While some sports, like snowboarding, she...
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178: Why We Roll, 2026 Walk & Roll Special Episode
Join us for the 2026 Walk & Roll special episode of FSHD Straight Talk with Tim Hollenback. This year’s episode features: Dana Simone-Kurtz, San Diego; Joanne Dalessandro, Chicagoland; and Jane Roberts, Alberta, Canada. This year’s Walk leaders represent folks living with FSHD, care partners, and...
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177: Every Day is a Gift with Stephen Pollock
Stephen Pollock is a dedicated father and pastor, living each day as a commitment to his faith. Born in Ireland, Pollock started his career practicing family medicine. In this episode he reflects on how his symptoms were visible as early as his med school anatomy classes, yet it would be almost…
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176: Beating FSHD with Positivity with Rami Jokinen
Rami Jokinen is a scholar, a musician, an advocate, and a jokester. Part of the Beat FSHD!-Combo, you might recognize him from the band’s recent World FSHD rock anthem and as the wearer of a hat bearing his ask of physicians and researchers “Feel free to beat FSHD.” In this episode of FSHD…
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175: Rethinking Fashion Through FSHD
Fashion designer Vasiliki “Vas” Charitonos believes adaptive clothing can be both accessible and stylish. Her approach is informed by her own experience with FSHD. As a teenager, Vas began adapting her clothes when getting dressed became more difficult, a challenge familiar to many people living...
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174: Loving Through Live with FSHD - A Conversation with Kathy Chase
Kathy Chase has a sense of humor - about life and her husband Larry’s FSHD diagnosis. In this episode, Kathy joins Tim for a candid conversation about how FSHD has affected and strengthened her marriage. Kathy’s blogs are eloquent as is she as she provides insight into her experience as a spouse,...
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173: Strive to Inspire with Chris Carrino
This week, Chris Carrino returns to FSHD Straight Talk for a conversation about inspiration. Recently awarded the Curty Gowdy Media Award and entered into the Naismith Basketball Hall of Fame, Carrino discusses feeling humbled and reacting to how sports announcing has both inspired him and…
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172: World FSHD Day 2026 Special Episode
Happy World FSHD Day 🍊🧡 On June 20th, folks living with FSHD and their communities come together to raise awareness about FacioScapuloHumeral Muscular Dystrophy. June 20th is a day for sharing stories and information about this rare, relentlessly progressing disease. In this year's World FSHD…
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168: Against the Current: a Conversation with Lexi and Kate
This week Lexi Levine returns to the podcast accompanied by Kate, an adaptive crew athlete and subject of Lexi’s latest documentary film “Against the Current: Kate’s Fight for Inclusion.” Learn about crew (as a sport), Kate’s role as coxswain, living with a disability in Boston, and Lexi losing…
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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...
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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...
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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…
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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…
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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,...
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165: Blazing a Trail: an Artful Vision for the Future of FSHD Community Support
Almost 1 year to date, Art Abrams went from podcast listener to podcast guest, BetterLife FSHD Ambassador, and Leader of the new Iowa Chapter. In this episode, Tim and Art discuss life after diagnosis, workshopping how to tell folks, and the importance of finding and creating community support.…
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164: Keep Rolling: The Red Scooter Diaries Remastered
This week we’re sharing a remastered version of an episode from 2022 featuring Claire Szabo-Casella, author of The Red Scooter Diaries and start of the short documentary film of the same name. During this phenomenal conversation, Claire and Lou discuss their efforts to create more accessible…
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163: We Aren't Less Than, We're Doing It Different with Jessica Ryley Hammond
Tim kicks off 2026 by interviewing Jessica Ryley Hammond, a counselor running for Harford County Council. A lifelong athlete and horse-rider, Jessica was inspired to run for County Council because her rural community expanded so quickly, the infrastructure couldn’t keep up. In addition to...
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162: AMA: Answering Your Questions About FSHD
In our first ever Ask Me Anything (AMA) episode, Tim hosts a panel of FSHD experts to answer questions submitted by you! Amanda Hill, Dr. Lucienne Ronco, and Dr. Michelle Mellion answer questions about how to effectively describe pain to your care providers, how AI is advancing or assisting FSHD...
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161: Pilates for FSHD, Rehab & Muscle Health: an Interview with Carme Farré, CEO/Founder of FaceToned
Join Tim for a fascinating episode with Carme Farré, CEO/Founder of FaceToned. From a young age, Carme found herself fascinated with yoga, pilates, and holitics health and wellness practice. She comes from a family where multiple members live with FSHD and was surprised that her career provided...
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160: Adapting the Best We Can with Quinn Wilton
In this week’s episode, Tim speaks with Quinn Wilton, a social worker and DIY fundraiser, about her life, career trajectory, and growing community. While Quinn does give away some of the secrets to a stellar event, the importance of family, sibling, and community support is at the core of this...
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159: Do Hard Things: Movement is Medicine & Riding to Raise Awareness about Early Onset FSHD with George Pollock & Ally Roets
In this episode, we have two return guests: George Pollock, Team FSHD Cycling, and Ally Roets, Parents’ Roundtable Leadership. George and Ally join Tim to discuss their participation in the upcoming Tour de Tuscon, a world-class cycling race, and their work to raise awareness about and funds for...
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158: Always a Work in Progress: Growth through Movement, Connection, and Adapation with Elissa
Join Tim and special guest Elissa for a deep conversation covering topics including: How FSHD can affect post-partum healing Finding a physical therapist who explains exercise in your “language,” Caring for your body and mind, and Learning to own your FSHD and it’s progression Despite living with...
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157: Expanded Access Crash Course with Ally Roets and Dr. Michelle Mellion
Join Tim, Ally, and Michelle for a crash course into expanded access. Expanded access allows folks living with rare diseases to request access to experimental drugs (those in clinical trials) even if they did not meet the clinical trial inclusion criteria. Ally and Michelle cover: —what is…
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156: Lived Experience Matters: The Impact of Storytelling in Rare Disease Communities & Advocacy with Michael King
Join Tim for an interview with Michael King, return guest and leader of the North Carolina Chapter and Walk & Roll. In this episode, King discusses the power of sharing your FSHD story to create community, as part of advocacy efforts, and to effect change. No one knows the experience of living…
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155: 2025 Walk & Roll Special
Join us for the 2025 Walk & Roll special episode of FSHD Straight Talk with Tim Hollenback. This year’s episode features: Amy Bekier, San Diego; Ian Barr, Long Island, NY; Mollie Garrett, Virginia; Meg Hart, Mid-Atlantic; and CeCe Bell, Intermountain (Idaho). This year’s Walk leaders represent...
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154: Don’t Let It Get to You: Living & Growing with FSHD with Kendra Vaalemon
This week, Tim spoke with Kendra, an Idaho resident with a family history of FSHD. Diagnosed at age 9, Kendra knew she had FSHD as early as 6 as her symptoms resembled those of her older brother. Kendra discusses how her faith helps her deal with the constant grieving process caused by FSHD: the...
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153: More Laughter, More Love: Reflections on an Inter-Abled Relationship with Leah & Joe Lee
Loving someone with FSHD means loving someone through constant change, a path that Leah & Joe have traveled together since they met in 8th grade. Despite coming from a family with FSHD, Joe faced a long diagnostic journey filled with uninformed and misinformed care providers, leading the couple…
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152: A Career Retrospective: Over a Decade of Care, Advocacy & Writing with June Kinoshita
In honor of her retirement, join us for a final interview with June Kinoshita. Not only was June the first podcast guest, she served the FSHD Community with grace, vision, and unrelenting passion for over a decade. In this conversation with Tim, June reviews the highs, lows, and immeasurable…
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151: A Parent’s Perspective: FSHD History, Advancements & What We Can Do Now
This week, Dr. Ray Huml joined host Tim Hollenback for a conversation that dives deep into FSHD research, history, and treatment development. Dr. Huml, a dedicated caregiver, parent, and rare disease specialist, discussed his work on writing a book about rare disease care, disability rights...
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150: The Power of Vulnerability with Aidan Mace, FSHD Straight Talk with Tim Hollenback
In this episode, Tim speaks with Aidan Mace about the power of vulnerability. Diagnosed within the last 4 months, Mace shares his diagnosis story – paging Dr. Google! – experiences with grief, and how FSHD changed his career path. Trained as an Emergency Responder, Fire Fighter, and EMT, Mace’s...
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149: World FSHD Day Special - Supercut
It’s World FSHD Day, a global day to raise awareness about FSH Muscular Dystrophy, it’s symptoms, and our fight for a cure. Join Tim for a special edition episode: our first ever SUPERCUT. In addition to Tim’s thoughts about World FSHD Day, the importance of the color orange, and our history…
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148: Rolling Around Fundraising: The Story & Perseverance of the Ahlers Family
Join Tim for a conversation with siblings Michele and Michael Ahlers about family, fundraising, and FSHD. Listen as Michael recounts Michele giving him the “FSHD frisk” and Michele shares her complicated emotions at Michael’s diagnosis shortly after the siblings re-entered each other’s lives....
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147: Hopeful Science: an Interview with the Myoterra Team
You might have heard the exciting news: an undergraduate research team led by Heloise Hoffmann received $50,000 to fund their research into a novel treatment for FSHD. Join Tim for a conversation with Heloise, who lives with FSHD, and Alice as they discuss their unique approach, the varying pace…
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146: Fiercely an Advocate: Living with Early-onset FSHD
Join Tim for a conversation with Tatiana Garcia, a college student in California. Tim & Tatiana talk misdiagnosis, the importance of family and community support, everyday adaptations, and how to become a fierce advocate for yourself and others. Want to be on the podcast? Reach out like Tatiana…
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145: Powering the Path Forward with Erin Saxon
Join Tim for a conversation with Erin Saxon, Marketing Director, about a new look for the FSHD Society. From the empathy and intention behind brand colors to more cohesive messaging, Tim and Erin cover the full gamut of the process undertaken to rebrand the FSHD Society. Tune in for a look at how...
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144: Growth Through Coaching, a Solo Episode of FSHD Straight Talk with Tim Hollenback
In this rare solo episode, hear host Tim Hollenback’s FSHD story and his personal philosophy on coaching. Adapted from his 2025 VLS story, don’t miss this opportunity to learn about Tim, the history of the podcast, and how an FSHD diagnosis can spur anyone into action. No one knows the experience...
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143: Pushing Through, Gaining Ground: Athletics & Life with FSHD
This week, Johnny Quintana joins host Tim Hollenback for a conversation about athleticism & perseverance. At the beginning of March 2025, Johnny placed 4th in the US ParaClimbing National Championship, a win allowing him to compete internationally as he works towards a spot on the 2028 USA...
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142: Caregiving & Advocacy: Stories of the Then & the Now
Please note: This episode contains discussions of sensitive topics including death, diagnosis, and suicide. Listen with care. This week, join host Tim Hollenback for an interview with Jim Chin, Board Chair. In addition to caring for a wife and son who lived with FSHD, Jim has served on the Board…
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141: Finding Synergy, Innovation & Commitment in Our Care Networks with Gregg Lichtenstein, FSHD Straight Talk
This week, Gregg Lichtenstein, leader of the FSHD Wellness Hour online group, joins host Tim Hollenback for a conversation about creating and maintaining care networks. Don’t miss their candid conversation about the power of community—sometimes you need to talk to someone who understands how...
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140: A Passion for Education & Independence with Nia Stivers, FSHD Straight Talk
Join host Tim Hollenback for a humorous, insightful conversation with Nia Stivers. Passionate, vulnerable, and honest, Nia shares stories about growing up and going through college with FSHD, watching her mother’s progression, finding faith, and teaching her students to see and embrace…
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139: “We don’t grow in the good times. We grow during challenges.” FSHD Straight Talk with Dr. Jennifer Egert
Join host Tim Hollenback for a heartfelt and honest conversation with returning guest, Dr. Jennifer Egert. A licensed clinical psychologist living with FSHD, Egert guides Tim through her own reflections on decreased mobility, clinical trial participation, connection with others, and the…
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138: Progress & Hope in FSHD Research with Dr. Lucienne Ronco, FSHD Straight Talk
Grab your coffee, a pen, and a notebook and curl up for a masterclass in FSHD Research and developments with Dr. Lucienne Ronco. In the first FSHD Straight Talk episode of 2025, host Tim Hollenback talks everything FSHD research with the new Chief Science Officer of the FSHD Society. Dr. Ronco...
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137: BetterLife FSHD Can Help You Back, FSHD Straight Talk with Amy Bekier and Kayliegh Worek
You’ve seen the social media posts and heard the ads, now join us for a deep dive into BetterLife FSHD. This week, Tim is joined by Amy Bekier, BetterLife FSHD Focus Group Member, and Kayleigh Worek, BetterLife Program Manager. Together, they discuss: ––How BetterLife uses surveys to collect...
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136: Notes of Gratitude with Gracie Caggiano and Ben Livingston
Today’s special episode spotlights two gifted musicians whose artistry inspires gratitude and reflection. Gracie Caggiano, a Kansas City-based singer-songwriter, shares her unique approach to crafting soulful, poetic music that blends intricate guitar work with heartfelt lyrics. Ben Livingston, a...
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135: FSHD Cannot Stop an Adventurous Spirit with Don Burke, FSHD Straight Talk
“There was a time when those of us with FSHD might not have known anyone with FSHD outside of our families.” Nearly 30 years after his diagnosis, Don Burke drove around the US and Canada for 93 days, including a stop at the 2024 FSHD Connect Conference in Denver. Join us for a heartwarming…
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134: Minutes Matter: Early Onset Advocacy with Ally, Debbie & Kristin
In this illuminating roundtable, Tim talks with Ally Roets, Debbie Eggleston, and Kristin Zwickau, the passionate moms leading the Early Onset Chapter. In addition to discussing how differently FSHD progresses in kids versus adults, Ally, Debbie, and Kristin touch on their past and upcoming...
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133: Life Re-Written: Jumping in After Diagnosis with Michael King
Join host Tim Hollenback for a phenomenal conversation with Michael King, the new Chapter Director for North Carolina. A go-getter by nature, Michael went from advocating for his health and a diagnosis to experiencing life after diagnosis to his fullest potential. In addition to attending Connect...
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132: 2024 Walk & Roll Celebration!
Happy International Walk & Roll Day! 🎉 In today’s special episode of FSHD Straight Talk, Tim interviews amazing Walk & Roll leaders to celebrate. Tune in as Mary Mauch and Suzy Kosten from Chicago, Ann Kolakowski from the Mid-Atlantic region, and Michael King from North Carolina share their...
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131: Find Your Person and Your Passion: FSHD Straight Talk with Brittany Lauro
Join host Tim Hollenback and guest Brittany Lauro for this honest conversation about love, relationships, and FSHD. A Team Captain and volunteer for the Sacramento Walk & Roll, Brittany is a world traveler who turned to photography as FSHD affected her ability to walk and hike. In addition to...
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ABOUT THIS SHOW
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.
HOSTED BY
FSHD Straight Talk
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Frequently Asked Questions
How many episodes does FSHD Straight Talk with Tim Hollenback have?
FSHD Straight Talk with Tim Hollenback currently has 194 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is FSHD Straight Talk with Tim Hollenback about?
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...
How often does FSHD Straight Talk with Tim Hollenback release new episodes?
FSHD Straight Talk with Tim Hollenback publishes regularly with 194 episodes available. Check the episode list for the typical release schedule.
Where can I listen to FSHD Straight Talk with Tim Hollenback?
You can listen to FSHD Straight Talk with Tim Hollenback on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts FSHD Straight Talk with Tim Hollenback?
FSHD Straight Talk with Tim Hollenback is created and hosted by FSHD Straight Talk.
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