FSHD Straight Talk with Tim Hollenback

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 Day Special Episode, Tim speaks with Raj Badiani of FSHD UK and Neil Camarta of FSHD Canada. Raj and Nei...

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 her drone in the Charles. In addition to the film, Lexi and Kate discuss their experiences living with F...

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...

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, Caggia...

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 d...

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 be...

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...

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. For Art, lonliness constitutes one of the hardest parts of FSHD, inspiring him to make sure no one ever...

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 spaces in AZ to increase quality of life for folks with FSHD and additional disabilities. Claire and Lou di...

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 discussing how FSHD affected her ability to ride, Jessica touches on how FSHD impacts her ability to climb hil...

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 research and drug development, and more. Everyone experiences FSHD differently, and we learn the most,...

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 tools to help her family, and, eventually herself. Recently diagnosed, Carme is a passionate advocate fo...

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 issue. Tune in to hear Quinn’s incredible story from life in Canada’s urban and rural areas. No one knows...

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 Early Onset FSHD research & treatment access. While Ally covers the importance of Early Onset speci...

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 FSHD for over two decades, this was Elissa’s first conversation with another person living with...

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 Expanded Access; how it differs from Open Label Extension; and who can qualify for EA —the application proce...

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 with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare...

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 folks living with FSHD, care partners, and loving family; “OG” leaders, veteran walk & rollers, a...

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...

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 importa...

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...

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 expe...

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 A...

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 insigh...

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 fundraisin...