FSHD Straight Talk with Tim Hollenback

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...

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 k...

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 specif...

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 F...

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 pro...

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 d...

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, and fi...

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 mus...

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 importan...

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 t...

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 ...

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 th...

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 ins...

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 fundrai...

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-focuse...

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 (mailto:FSHDRadio@FSHDSOciety....

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 th...

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 wit...

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 cha...

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 w...

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 streng...

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...

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...

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 Fulc...

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 ...

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 m...

“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 ad...

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 advocacy efforts, the importance of changing clinical trial designs, and parenting in rare disease spaces...

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 2024, Michael spearheaded the North Carolina Walk & Roll and helped his F3 friends raise funds thro...

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 stories and motivations for leading Walk & Rolls. Watch the episode on Facebook or YouTube for photo rec...

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 discussing the importance of spousal support, Brittany shares humorous anecdotes from married life incl...

In this episode, host Tim Hollenback talks with Dan Wilson, a retired respiratory therapist and NASCAR enthusiast. In addition to discussing resources for home safety and building support networks to help with FSHD’s relentless progression, Dan discusses his hope to build an FSHD community in the Indianapolis area. FSHers of Indiana, if you’re listening, reach out! On the second and fourth Tue...

Meet Mary Beth McCabe, the passionate Captain of Team McCabe and the NJ Shore Walk & Roll Leader. As host Tim Hollenback drums up support for the 2024 Walk & Roll season, hear how Mary Beth got involved and learned to host a successful fundraiser. Mary Beth is a hoot, a holler, and a half. Don’t miss this fun and informative episode. On the second and fourth Tuesday of every month, listen for ...

 Rob Stemple, musician and writer, joins host Tim Hollenback for a candid conversation about FSHD and family. In this episode, Tim and Rob discuss the importance of family support, home and other accommodations, and how using writing, music, and other art forms can create a powerful form of emotional release. Tune in to hear all about Rob's long history as a musician, from his start in polka ba...

In this episode of FSHD Straight Talk, host Tim Hollenback talks with George Pollock, longtime member of the FSHD Society Board of Directors and a powerful advocate FSHD treatments. Join Tim and George for a conversation about the healing power of movement and to hear more about George’s passion for endurance athletics and upcoming participation in the Triple Bypass Race (https://www.fshdsociet...

In this episode of FSHD Straight Talk, Tim interviews Chris Carrino, the play-by-play announcer for the Brooklyn Nets and founder of the Chris Carrino Foundation for FSHD! Chris talks about his career starting as a part-time producer to becoming a prominent voice in sports broadcasting. He also discusses life with FSHD and advocacy work, including a recent trip to Capitol Hill. This is a slam d...

It’s World FSHD Day! To celebrate today, Tim Hollenback, FSHD Straight Talk host, talks with: Ricardo Gerpe from FSHD Spain; Chelsea Moeller from the FSHD Society; Rick & Terry Colella from Friends of FSH Research; Jennifer Cherniwchan or the Alberta Chapter; and Chris Carrino, announcer for the Brooklyn Nets and founder of the Chris Carrino Foundation for FSHD. For more information about Worl...

 In this episode of FSHD Straight Talk, Tim speaks with Wang Wen, a passionate advocate and prolific storyteller living in China. Following his long road to diagnosis, Wang has sprung into action leading support groups, creating educational documentaries, and using his social media platforms to raise awareness about FSHD. In 2025, Wang even hopes to write a book collecting stories from Chinese ...

When a busy schedule, family needs, and chronic pain limit your bandwidth, committing to regular exercise and healthy eating can be hard. In this episode of FSHD Straight Talk, host Tim Hollenback and his guest discuss their exercise routines, building strength through consistency, and the importance of committing to your health. For his guest, regular exercise, healthy eating, mindfulness, and...

In this laid back episode, Tim discusses music, San Diego chapter program involvement, and staying strong in the face of FSHD progression with Callum Arras. Bridging their nearly 20 year age gap, Hollenback and Arras find common ground in their belief that self-knowledge, willpower, and determination helps them maintain activities, mobility, and their sense of self. Conversational yet sincere, ...

In today’s episode of FSHD Straight Talk, Madison Ferris dives into her latest project, the off-Broadway romantic comedy “All of Me,” which starts today! Madison shares her experiences of bringing diversity to the stage as the first wheelchair user to lead on Broadway. Catch her thoughts on how roles like hers can shift perceptions and open doors in the arts. You can see Madison live from April...

In this episode, FSHD Straight Talk host Tim Hollenback speaks with Trish about life during and after diagnosis. In this candid conversation Trish (last name withheld for privacy) and Tim discuss the impact of physical therapy, the frustrations that PTs often know or do more than PCPs, and additional intricacies and intimacies of living with FSHD. As an added bonus, Trish delivers Tim's favorit...

In this episode of Straight Talk, Tim is joined by David Rubin, NYC Chapter Leader. After a successful career in business and accounting, David discusses how he found new passions, and a way to keep busy in retirement, through board service and Chapter Program leadership. If you've heard of Magic for a Cure or participated in a NYC Walk and Roll, you probably know David. If you haven't met him ...

Tim is joined by Lonwabo Nene, scriptwriter, filmmaker, and FSHD advocate from South Africa. If you've seen his engaging sessions on Feeling Fit (https://youtu.be/NfskqqQx7Rg), you already know Lonwabo has invaluable insights to share! In this episode, he talks about his journey with FSHD, from the struggle for diagnosis to actively managing his symptoms through fitness. Listen for Lonwabo’s pr...

We’re thrilled to share a conversation with Danny Kurtzman and Shane Stanger, the duo behind Good Bad Things! Their film is currently making waves (and taking home awards!) in the festival circuit for its moving story as well as groundbreaking representation of disability. Danny, the film’s star, is an actor living with FSHD, and the story is inspired by his life and close friendship with Shane...

In this episode, Tim sits down with Jane Nemke, an accredited International Association Color Consultant and the founder of Designs to Thrive. Jane shares her inspiring journey into Universal Design as a means to create flexible and age-friendly living spaces, driven by her personal experience with FSHD. Through the lens of her own experiences and involvement with organizations like SAIL and T...

Join host Tim Hollenback for a special conversation with Marisa Spain. Marisa, known for Disabled in Nature, her YouTube channel and Instagram, discusses living with Early On-Set FSHD, barriers to receiving mobility devices and assistance, and accessibility in nature and outdoor environments. Share your thoughts, or post questions in the comments section. You can also listen to the episode on y...

Join host Tim Hollenback and special guest Chelsea Moeller for a discussion of living with FSHD, from diagnosis to trial participation. Tim also teases some updates to FSHD Radio. On the 2nd Tuesday of every month, we will bring you a new episode of FSHD Radio: Community Profiles. This long-form show includes profiles of the FSHD community living rich, full lives and diving into their experien...

In this episode, join Tim as we wrap up the year with a profound discussion on the future of FSHD treatment and advocacy. Guest Ken Kahtava, Chief Business Officer of the FSHD Society, delves into Project Mercury, a groundbreaking initiative aiming to revolutionize access to therapies, improve clinical trials, and engage the FSHD community globally. From disease progression modeling to the coll...

In this episode, Tim chats with Michael Osborne, a fellow Milwaukeean and baseball coach living with FSHD. Michael and Tim share the story of how they met by chance on the baseball field and what it means to come across another person who understands the experience of having FSHD. Michael, a dad of three and business owner, also shares his diagnosis story and the impact FSHD has had within his ...