FSHD Straight Talk with Tim Hollenback

FSHD Straight Talk with Tim Hollenback

This talk show features people, advocacy, research, and more from the FSH muscular dystrophy community. Sponsored by the FSHD Society and made possible by our fabulous host and member of the FSHD community, Tim Hollenback.

Episodes

154: Don’t Let It Get to You: Living & Growing with FSHD with Kendra Vaalemon

August 26, 2025 • 75 mins
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 grief at losing her brother so young and the grief that comes with each changed ability and lost muscle. Kendra’s story is one of per...
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153: More Laughter, More Love: Reflections on an Inter-Abled Relationship with Leah & Joe Lee

August 12, 2025 • 70 mins
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 to do their own research with considerable trial and error. In this episode they discuss the importance of community support, how ...
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152: A Career Retrospective: Over a Decade of Care, Advocacy & Writing with June Kinoshita

July 22, 2025 • 70 mins
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 growth she saw and cultivated. FSHD research, care, advocacy, and community building would not be what they are today without June. Thank...
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151: A Parent’s Perspective: FSHD History, Advancements & What We Can Do Now

July 8, 2025 • 51 mins
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 advocacy, and small ways we can create massive change for loved ones living with FSHD.

No one knows the experience of living with...
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150: The Power of Vulnerability with Aidan Mace, FSHD Straight Talk with Tim Hollenback

June 24, 2025 • 65 mins
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 FSHD diagnosis spurred him to find a new way to continue serving his community. Mace now serves as the Account Manager for Fire Fighte...
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149: World FSHD Day Special - Supercut

June 20, 2025 • 67 mins
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, we’ve stitched together impactful moment from the last year of the podcast. Join us for stories and insight from Nia Stivers, Jennifer E...
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148: Rolling Around Fundraising: The Story & Perseverance of the Ahlers Family

June 10, 2025 • 43 mins
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. Committed to supporting each other and the FSHD community through training, healthy eating, and fundraising, tune in for the Ahlers’ Fam...
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147: Hopeful Science: an Interview with the Myoterra Team

May 27, 2025 • 33 mins
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 of research, and their nearly two year process to design and fund their project. From patient-focused interviews and endless hours in...
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146: Fiercely an Advocate: Living with Early-onset FSHD

May 13, 2025 • 53 mins
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 did on social media or send Tim an email at FSHDRadio@FSHDSOciety.org.  

No one knows the experience of living ...
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145: Powering the Path Forward with Erin Saxon

April 22, 2025 • 45 mins
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 the Society will power the path forward.

No one knows the experience of living with FSHD better than those who have it. FSH...
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144: Growth Through Coaching, a Solo Episode of FSHD Straight Talk with Tim Hollenback

April 8, 2025 • 21 mins
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 of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tun...
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143: Pushing Through, Gaining Ground: Athletics & Life with FSHD

March 25, 2025 • 64 mins
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 Paralympic Team. When doctors told Johnny that FSHD would end his career as an athlete, he rose to the challenge to live life to his fu...
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142: Caregiving & Advocacy: Stories of the Then & the Now

March 11, 2025 • 56 mins
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 of Directors for 18 years. Knowledgeable about the history of the Society and every aspect of our work, Jim shares his yea...
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141: Finding Synergy, Innovation & Commitment in Our Care Networks with Gregg Lichtenstein, FSHD Straight Talk

February 25, 2025 • 59 mins
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 difficult it is to get up from a chair, or the toilet. As Gregg says in the episode, everyone has strengths and deficits. “Playing to str...
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140: A Passion for Education & Independence with Nia Stivers, FSHD Straight Talk

February 11, 2025 • 61 mins
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 difference. Small and large moments of compassion from her community have shaped Nia’s life and influenced her path to being a high school teac...
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139: “We don’t grow in the good times. We grow during challenges.” FSHD Straight Talk with Dr. Jennifer Egert

January 28, 2025 • 66 mins
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 importance of quieting the world around us so we can think and breathe. Winter encourages us to hibernate and rest. Take a deep breath and shi...
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138: Progress & Hope in FSHD Research with Dr. Lucienne Ronco, FSHD Straight Talk

January 14, 2025 • 57 mins
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 discusses: her work designing clinical trials at Fulcrum; initial insights from and plans for the Fulcrum Phase 1 and Phase 2 trial dat...
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137: BetterLife FSHD Can Help You Back, FSHD Straight Talk with Amy Bekier and Kayliegh Worek

December 10, 2024 • 46 mins
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 comprehensive data from platform users
––How survey data can match users with clinical trials/research opportunities AND pro...
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136: Notes of Gratitude with Gracie Caggiano and Ben Livingston

November 28, 2024 • 78 mins
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 multi-talented Austin artist, talks about his eclectic sound, his love for collaboration, and how music has been a constant source o...
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135: FSHD Cannot Stop an Adventurous Spirit with Don Burke, FSHD Straight Talk

November 12, 2024 • 63 mins
“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 episode featuring Don as he shares stories and insights from his most recent trip and years of previous adventures. A “Midwest nice” risk t...
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