Shows
FSHD Straight Talk with Tim HollenbackAdapting the Best We Can with Quinn WiltonIn 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 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...
2025-11-251h 03FSHD Straight Talk with Tim HollenbackDo Hard Things: Movement is Medicine & Riding to Raise Awareness about Early Onset FSHD with George Pollock & Ally RoetsIn 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 specific research and funding, Geroge discusses the mindset and intentional training behind his training. Living with FSHD is like competing in an endurance event: it takes mindset, training, nutrition and hydration, consistency, support, and rest.
As Ge...
2025-11-1147 minFSHD Straight Talk with Tim HollenbackAlways a Work in Progress: Growth through Movement, Connection, and Adapation with ElissaJoin 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 FSHD. Her conversation with Tim is evocative, meditative, and a true testament to how living with FSHD is a complicated mixture of connection, movement, growth, and adaptation.
No one knows the experience of living with...
2025-10-281h 06FSHD Straight Talk with Tim HollenbackExpanded Access Crash Course with Ally Roets and Dr. Michelle MellionJoin 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 process and general timelines
—Familial, medical, and financial considerations including how to cover costs that insurance might deny or, at minimum, not cover
—the importance of increasing access to treatments and the benefits...
2025-10-1454 minFSHD Straight Talk with Tim HollenbackLived Experience Matters: The Impact of Storytelling in Rare Disease Communities & Advocacy with Michael KingJoin 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 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 epi...
2025-09-231h 05FSHD Straight Talk with Tim HollenbackDon’t Let It Get to You: Living & Growing with FSHD with Kendra VaalemonThis 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 perseverance, community support, love, and dark humor in the wake of FSHD relentless progression.
2025-08-261h 15FSHD Straight Talk with Tim HollenbackMore Laughter, More Love: Reflections on an Inter-Abled Relationship with Leah & Joe LeeLoving 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 to adapt, supplements and vitamins, why you need to hydrate, and so much more. Married for 15 years and together for 20, Leah & Joe’s partnership proves their philosophy: when living in an inter-abled re...
2025-08-121h 10FSHD Straight Talk with Tim HollenbackA Career Retrospective: Over a Decade of Care, Advocacy & Writing with June KinoshitaIn 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 you, June, for your time, your words, and your ever listening ear.
No one knows the experience of living with FSHD better than those who have it. F...
2025-07-221h 10FSHD Straight Talk with Tim HollenbackA Parent’s Perspective: FSHD History, Advancements & What We Can Do NowThis 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 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...
2025-07-0851 minFSHD Straight Talk with Tim HollenbackThe Power of Vulnerability with Aidan Mace, FSHD Straight Talk with Tim HollenbackIn 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 Fighter Partnership at the Muscular Dystrophy Association. Tune in to hear Mace’s inspiring story.
No one knows the experience of living with FSHD better than those who have it...
2025-06-241h 05FSHD Straight Talk with Tim HollenbackWorld FSHD Day Special - SupercutIt’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 Egert, Chris Carno, Dan Wilson, and Debbie, Kristin, and Ally of our Early Onset Parents’ Roundtable.
For more information about World FSHD, pleas...
2025-06-201h 07FSHD Straight Talk with Tim HollenbackRolling Around Fundraising: The Story & Perseverance of the Ahlers FamilyJoin 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’ Family story of perseverance.
Support Michael in the 2025 Triple Bypass: https://www.bikesignup.com/ahlers-fshd
About the Triple Bypass: https://www.triplebypass.org/
No one knows the experience of living wit...
2025-06-1043 min
FSHD Straight Talk with Tim HollenbackHopeful Science: an Interview with the Myoterra TeamYou 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 the lab, the undergrad team at Myoterra Biosciences is dedicated to finding a cure for FSHD as science continues to advance at a breakneck pace.
For more information on Myoterra...
2025-05-2733 min
FSHD Straight Talk with Tim HollenbackFiercely an Advocate: Living with Early-onset FSHDJoin 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 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 w...
2025-05-1353 minFSHD Straight Talk with Tim HollenbackPowering the Path Forward with Erin SaxonJoin 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. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow...
2025-04-2245 minFSHD Straight Talk with Tim HollenbackGrowth Through Coaching, a Solo Episode of FSHD Straight Talk with Tim HollenbackIn 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. 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 yoursel...
2025-04-0821 min
Consumer Health PartnershipsFrom Patient Stories to Clinical Solutions: A Journey in FSHD Patient EmpowermentIn this episode of Consumer Health Partnerships, we speak with Emma Weatherley, Managing Director of FSHD Global Research Foundation, and Kalvin Hopper, an advocate and world-ranked wheelchair tennis player, about the beginning and impact of the CURE FSHD registry, a groundbreaking patient-led initiative designed to support clinical trials for Facioscapulohumeral Muscular Dystrophy.They delve into the challenges faced by people living with FSHD, the innovative approaches adopted to overcome these hurdles, and the strategic partnerships that have been formed to make the registry a reality. Emma and Kalvin explore the project's patient-centric approach, highlighting the significance of...
2025-03-3149 minFSHD Straight Talk with Tim HollenbackPushing Through, Gaining Ground: Athletics & Life with FSHDThis 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 fullest potential.
Throughout the episode, Johnny and Tim discuss their athletic careers, how they’ve adapted to physical challenges, and the importance of a good training regimen, healthy diet, an...
2025-03-251h 04FSHD Straight Talk with Tim HollenbackCaregiving & 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 of Directors for 18 years. Knowledgeable about the history of the Society and every aspect of our work, Jim shares his years of experience with Tim before their conversation turns to a mutual love of coaching and baseball. As Tim said in the episode, he’s glad Jim could be...
2025-03-1156 minFSHD Straight Talk with Tim HollenbackFinding Synergy, Innovation & Commitment in Our Care Networks with Gregg Lichtenstein, FSHD Straight TalkThis 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 strengths and finding folks to help with deficits, because everyone has them,” makes the difference.
No one knows the experience of living with FSHD better than those who have...
2025-02-2559 minFSHD Straight Talk with Tim HollenbackA Passion for Education & Independence with Nia Stivers, FSHD Straight TalkJoin 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 teacher. Don’t miss her story and the chance to learn about Scoot Scoot, her nicknamed power chair!
No one knows the experience of living with FSHD better than those who have it...
2025-02-111h 01FSHD Straight Talk with Tim Hollenback“We don’t grow in the good times. We grow during challenges.” FSHD Straight Talk with Dr. Jennifer EgertJoin 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 shift yourself towards a more mindful season. 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...
2025-01-281h 06FSHD Straight Talk with Tim HollenbackProgress & Hope in FSHD Research with Dr. Lucienne Ronco, FSHD Straight TalkGrab 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 date; the promise of Avidity; and her hope-filled approach to working in the FSHD landscape. After their conversation, Tim offers advice, reflection on 2024, and his own hopes for FSHD treatments...
2025-01-1457 min
FSHD Straight Talk with Tim HollenbackBetterLife FSHD Can Help You Back, FSHD Straight Talk with Amy Bekier and Kayliegh WorekYou’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 provide researchers with information to conduct their research
––Current and upcoming features and benefits
––How Better Life provides resources and connections to help everyone live a Better Life while living with FSHD. ...
2024-12-1046 min
FSHD Straight Talk with Tim HollenbackFSHD 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 episode featuring Don as he shares stories and insights from his most recent trip and years of previous adventures. A “Midwest nice” risk taker, Don wants everyone with FSHD to enjoy life to the fullest. “We have to take risks. We have to plan more than most. I have to adapt s...
2024-11-121h 03FSHD Straight Talk with Tim HollenbackLife Re-Written: Jumping in After Diagnosis with Michael KingJoin 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 through their annual extinction run. Michael is a testament to the importance, power, and collective strength built through community. Tune in to hear his full story plus Tim’s thoughts on the recent Fulcrum trial news.
No one kno...
2024-10-0849 min
FSHD Straight Talk with Tim HollenbackFind Your Person and Your Passion: FSHD Straight Talk with Brittany LauroJoin 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 including the moment her husband thought she was going to tell him about her FSHD diagnosis. Tune in for her story of love, mindfulness, and community building.
On the second and fourth Tuesday of every month, listen f...
2024-09-1057 minFSHD Straight Talk with Tim HollenbackFind Catharsis Through Writing and Art: FSHD Straight Talk with Rob Stemple 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 bands at age 13 through his recent turn as a musician at nursing homes and family events.
On the second and fourth Tuesday of every month, listen for a new episode of F...
2024-07-2346 minFSHD Straight Talk with Tim HollenbackMovement is Medicine: The Story Behind FSHD CyclingIn 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. As George said during his interview, “You could be gardening, it doesn't matter, as long as you're moving...to the best of your abilities.”
On the second and fourth Tuesday of every month, listen for a new episode of FSH...
2024-07-0940 min
FSHD Straight Talk with Tim HollenbackFSHD Straight Talk: Behind the Mic with Chris CarrinoIn 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 dunk interview you don’t want to miss!
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
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2024-06-2559 minFSHD Straight Talk with Tim HollenbackWorld FSHD Day SpecialIt’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 World FSHD, please visit the FSHD Society website.
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...
2024-06-202h 08FSHD Straight Talk with Tim HollenbackUsing Storytelling and Activism to Build Awareness of FSHD in China with Wang Wen 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 FSHers! Tune in to hear how Wang uses storytelling and activism to build awareness and push back against isolation. Thank you to Wang for reaching out to be on the podcast! If you would like to share your experiences l...
2024-06-1136 minFSHD Straight Talk with Tim HollenbackFSHD Straight Talk: Commitment & Consistency, the Keys to Building Strength and Maintaining Bodily AutonomyWhen 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 an array of supplements have increased her strength and flexibility, allowing her to be healthier, happier, and more present with her family. Catch the entire episode for tips, tricks, and a little homework from Tim!
On the second...
2024-05-2845 minFSHD Straight Talk with Tim HollenbackWillpower and Determination in the Face of FSHD Progression with Callum ArrasIn 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, Hollenback and Arras' sharing of experiences and feelings is not an episode to miss.
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...
2024-05-1444 minFSHD Straight Talk with Tim HollenbackFSHD Radio: David Rubin on The Power and Passion of Chapter Program LeadershipIn 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 yet, spend the next 35 minutes hearing about how he stays passionate.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight...
2024-03-2653 minFSHD Straight Talk with Tim HollenbackLonwabo Nene on Fitness and Positivity while Living with FSHDTim 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 practical and positive approach to tackling FSHD’s daily challenges.
2024-03-1231 min
FSHD Straight Talk with Tim HollenbackFSHD Radio: Jane Nemke, Founder of Designs to ThriveIn 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 TZ of Madison, WI, Jane discusses the importance of designing spaces that enhance well-being and independence, regardless of age or physical challenges. Listen to hear how thoughtful design can help people thrive at any stage of life!
2024-02-1349 min
FSHD Straight Talk with Tim HollenbackFSHD Radio with Marisa SpainJoin 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 your favorite podcast app. Subscribe to make sure you never miss an episode!
Interested in being on the show in 2024, send Tim an email at FSHDRadio@FSHDSociety.Org.
Give Marisa a follow! Youtube/Instagram: @DisabledInNature
2024-01-2552 min
FSHD Straight Talk with Tim HollenbackFSHD Radio: Community Profiles with Chelsea MoellerJoin 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 experiences with FSHD.
A new video podcast is released the 2nd Tuesday of every month on YouTube and Facebook. Share your thoughts, or post questions in the comments section. You can...
2024-01-1744 minFSHD Straight Talk with Tim HollenbackProject Mercury, A Global Effort in FSHD Treatment DeliveryIn 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 collective power of global patient registries, this episode highlights the innovative strategies paving the way for a hopeful future in FSHD treatment.
2023-12-2819 minFSHD Straight Talk with Tim HollenbackCommunity Profiles: Michael Osborne - An FSHD Connection on the Baseball FieldIn 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 family.
2023-12-1239 minFSHD Straight Talk with Tim HollenbackFSHD Radio Show Community Profiles: Donna Russo - Actress, Dancer, ChoreographerThis month, we welcome actress, dancer, and choreographer Donna Russo. A performer with FSHD and Turner Syndrome, Donna has graced the stage in various productions, including Alvin and the Chipmunks and the Magic Camera, as Alvin. Her versatility extends to the world of television and film, where she has left her mark on numerous projects. Notably, Donna plays the lead in the international web series Donna On The Go, giving a lighthearted view of the challenges faced by individuals with disabilities. You can watch all the episodes at donna-on-the-go.com. Don’t miss Donna’s compelling story shared during this powe...
2023-10-1050 minFSHD Straight Talk with Tim HollenbackFSHD Radio Hot off the Press: Mel Hayes of Fulcrum with a REACH Trial UpdateEarlier this month, Fulcrum Therapeutics confirmed the completion of patient enrollment in the Phase 3 REACH clinical trial for losmapimod, a potential groundbreaking therapy for FSHD. Mel Hayes, Chief Operating Officer of Fulcrum sat down with Tim to discuss what this exciting milestone means and fill us in on the latest from Project Mercury.
Catch a new Hot off the Press episode on the 4th Thursday of every month. Listen on your favorite podcast app or watch on YouTube or Facebook. Subscribe to make sure you never miss an episode!
2023-09-2811 minFSHD Straight Talk with Tim HollenbackFSHD Radio Show Community Profiles: Jenny and Tony Teel, Thriving in an Interabled MarriageThis month, Tim talks with guests Jenny and Tony Teel! Tony is affected by FSHD, and this dynamic married couple runs a popular YouTube channel where they share valuable information and provide encouragement within the context of their interabled relationship. Subscribe to their YouTube channel at https://www.youtube.com/@jennyandtony
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook! Don’t forget to subscribe to make sure you never miss an episode!
2023-09-1250 minFSHD Straight Talk with Tim HollenbackFSHD Radio Hot off the Press: Max Adler on the LA Walk & RollMax Adler, a long-time friend of the FSHD Society, sits down with Tim to talk about the LA Walk & Roll! Listen to hear what the Walk & Roll means to Max and learn about the exciting things in store for the Los Angeles Walk. Max has a supporting role in Good Bad Things, and the film’s star Danny Kurtzman, who lives with FSHD, and director Shane Stanger will be at the LA Walk & Roll on September 17! Head here to get involved in the Walk & Roll to Cure FSHD: https://www.fshdsociety.org/walkroll
You can also read more ab...
2023-08-2413 minFSHD Straight Talk with Tim HollenbackFSHD Radio Show Community Profiles: Ryan Levinson, Sailor & FSHD VoyagerThis month, Tim got the chance to sit down with Ryan Levinson, a world traveler and legend in the FSHD Community. Ryan talks with Tim about sailing around the world, staying disciplined, and how to approach self-defense when you live with FSHD. Don’t miss this motivating conversation!
Diagnosed with FSHD as a teenager, Ryan's unwavering determination has never allowed his diagnosis to stand in the way of his dreams. In early 2015, Ryan and his wife set sail from their home in San Diego, California, embarking on a voyage along the Mexican coast and across the Pacific Ocean to...
2023-08-081h 01FSHD Straight Talk with Tim HollenbackFSHD Radio Hot off the Press: the 2023 Walk & Roll to Cure FSHD with Beth JohnstonThe 2023 Walk & Roll to Cure FSHD is just around the corner, and Beth Johnston, the FSHD Society's Chief Community Engagement Officer, has all the details you need to know! Listen to hear about what the Walk & Roll is, how to get involved, and what’s new this year.
Led entirely by dozens of dedicated volunteers and supported by a small staff, the Walk & Roll to Cure FSHD is the only signature event in North America completely focused on funding progress for FSHD. To find a Walk & Roll location near you, head to https://bit.ly/3NQycgC.
Cat...
2023-07-2720 minFSHD Straight Talk with Tim HollenbackFSHD Radio Hot off the Press: IRC 2023 RecapYou may have seen our updates from Milan last week, but what exactly is the International Research Congress? The FSHD Society’s annual FSHD IRC is the premier global conference focused exclusively on FSHD research. This conference brings together clinicians, researchers, pharmaceutical industry leaders, and scientists to discuss new developments and collaborate with one another. Check out this month’s Hot off the Press, recorded during the 30th annual IRC, to learn more and hear from Jamshid Arjomand, PhD. and Leigh Reynolds about the research that was shared last week.
Ally Roets and Sam Ray's video, which was shown...
2023-06-2237 min
FSHD Straight Talk with Tim HollenbackWorld FSHD Day: Mel Hayes, Fulcrum TherapeuticsIn today’s final episode, Mel Hayes, Chief Operating Officer of Fulcrum Therapeutics, discusses the REACH trial and other Fulcrum updates!
We are so grateful for all of today's exceptional guests and our gracious host, Tim Hollenback, for their dedication to the FSHD Community and for raising awareness on #WorldFSHDDay.
2023-06-2111 minFSHD Straight Talk with Tim HollenbackWorld FSHD Day: Dr. Nizar Saad, Nationwide Children's HospitalIn our next #WorldFSHDDay episode, Dr. Nizar Saad of Nationwide Children’s Hospital discusses his research and FSHD Lab Day, which is coming up on July 8th. We have one more episode coming up!
2023-06-2014 minFSHD Straight Talk with Tim HollenbackWorld FSHD Day: Raj Badiani, FSHD UKNext up in our series of #WorldFSHDDay special episodes is Raj Badiani of FSHD UK! Raj discusses the patient experience and FSHD UK’s incredible work towards clinical trial readiness.
2023-06-2013 minFSHD Straight Talk with Tim HollenbackWorld FSHD Day: Emma Weatherley, FSHD GlobalEmma Weatherley, Managing Director of FSHD Global chats with Tim from Down Under! Emma has been living with FSHD for years, and she spoke with Tim about Australia’s efforts with FSHD Global and Project Mercury. Stay tuned for more #WorldFSHDDay episodes!
2023-06-2042 minFSHD Straight Talk with Tim HollenbackWorld FSHD Day: Dr. Corrie Erasmus, Pediatric NeurologistUp next in our special #WorldFSHDDay interviews is Dr. Corrie Erasmus. Dr. Erasmus is a pediatric neurologist at Radboud University Medical Center in the Netherlands. Listen to hear about her research and the crucial importance of studying Pediatric FSHD.
2023-06-2015 minFSHD Straight Talk with Tim HollenbackWorld FSHD Day: Jack Gerblick, Board Member & Atlanta Chapter LeaderUp next for #WorldFSHDDay, Jack Gerblick, FSHD Society board member chats with Tim. A dedicated volunteer who is impacted by FSHD, Jack is also the Community Development & Engagement Committee Chair and the leader of the Atlanta Chapter. Listen to hear about the Atlanta Chapter watch party tonight as the King and Queen buildings are lit orange for FSHD awareness!
2023-06-2013 minFSHD Straight Talk with Tim HollenbackWorld FSHD Day: Neil Camarta, FSHD Canada FoundationIt’s World FSHD Day! In our first special mini-episode of the day, Neil Camarta talks with Tim about the growth of the FSHD Canada Foundation and the future of Project Mercury. Stay tuned for more special episodes!
2023-06-2014 minFSHD Straight Talk with Tim HollenbackHot off the Press: Plans for World FSHD Day 2023Did you know that June 20th is World FSHD Day? Check out this Hot off the Press episode to learn how to participate and what we have planned for this year! Tim will get you caught up on things like the Orange Slice Selfies campaign, special programming for the FSHD Radio Show, the International Research Congress in Milan, Project Mercury, and more. We have a lot in store for the month of June!
Find more details and the World FSHD Day toolkit here: https://www.fshdsociety.org/world-fshd-day/
Catch our Hot off the Press episodes on t...
2023-05-2509 minFSHD Straight Talk with Tim HollenbackFSHD Radio Show Community Profiles: All About Adoption with Deb Calhoun and Jim & Mary AlbertFamily planning and adoption can be difficult subjects for anyone to navigate, especially in the face of FSHD. In this episode, Deb Calhoun and Jim & Mary Albert discuss the topic of adoption and FSHD, as well as the hurdles involved in parenting while differently abled. We hope you enjoy this insightful conversation about a subject that often doesn’t get the attention it deserves!
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook! Don’t forget to subscribe to make sure you never miss...
2023-05-091h 05FSHD Straight Talk with Tim HollenbackFSHD Radio Hot off the Press: Amanda Hill on the New Era of Clinical TrialsApril’s Hot off the Press guest is Amanda Hill, Director of Research and Patient Engagement at the FSHD Society. We are entering a new era of clinical trials in FSHD research. This is an exciting time, and Amanda sat down with Tim to explain everything you need to know when considering getting involved in clinical trials.
We’d like to hear from you about your clinical trial experiences! Here is a link to the survey that Amanda mentions: bit.ly/41YqHZl
Catch our Hot off the Press episodes on the 4th Thursday of each month. Liste...
2023-04-2720 minFSHD Straight Talk with Tim HollenbackFSHD Radio Hot off the Press: Dr. Amy Halseth Answers Your Questions about Avidity’s FORTITUDE TrialHave questions about Avidity’s upcoming FORTITUDE trial? This month, our Hot off the Press guest is Amy Halseth, PhD, of Avidity Biosciences. Amy is the Executive Director of Clinical Development and serves as the Program Lead for the company’s FSHD program. Avidity Biosciences has announced its plans to launch FORTITUDE, a Phase 1 / 2 clinical trial. Amy sat down Leigh Reynolds of the FSHD Society to answer your questions from last month’s webinar. You can watch the webinar here if you missed it: bit.ly/3nc9LPV
Catch our Hot off the Press episodes on the 4th Thursd...
2023-03-2328 minFSHD Straight Talk with Tim HollenbackFSHD Radio Hot off the Press with Jamshid Arjomand, PhDThis month’s Hot off the Press guest is Jamshid Arjomand, PhD. Our Chief Science Officer is back on to talk about the Therapeutic Accelerator and the many ways the FSHD Society works to ensure the success of clinical drug trials. Jamshid explains how we help address gaps in clinical trial readiness and how you can get involved.
For a more in-depth look at the Therapeutic Accelerator, check out Jamshid’s presentation from our Volunteer Leadership Summit: https://bit.ly/3IrWrhg
Catch our Hot off the Press episodes on the 4th Thursday of each month.
2023-02-2331 minFSHD Straight Talk with Tim HollenbackFSHD Radio Hot off the Press with Jared JacobsenOur Hot off the Press guest this month is filmmaker Jared Jacobsen. Jared has volunteered with the FSHD Society for many years, and his film studio, Stephen Jake Video Productions is named after his late father, Stephen Jacobsen, who had FSHD. He speaks with Tim about his award-winning short film, “The Reinventor,” which documents the many transformations made by Amy Bekier, painter and founder of the FSHD Society’s San Diego chapter, while living with FSHD. We are excited to share Jared’s story and more details on the making of this authentic and moving film!
2023-01-2628 minFSHD Straight Talk with Tim HollenbackFSHD Radio Show: Community Profiles with Tim HollenbackTo kick off the new season, we turn the tables on FSHD Radio Host, Tim Hollenback, putting him in the guest seat!
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook!
2023-01-1050 minFSHD Straight Talk with Tim HollenbackFSHD Radio: End of Year Episode with Mark StoneJoin us for the last FSHD Radio Show of 2022! For this special episode, Tim and FSHD Society’s CEO, Mark Stone, discuss all that has happened in the FSHD community this past year. Mark shares exciting updates in FSHD research and development in 2022, reviewing all that has happened in the FSHD community this year, as well as taking a look ahead to 2023.
Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite podcast player or watch on YouTube or Facebook!
2022-12-131h 02FSHD Straight Talk with Tim HollenbackFSHD Radio Hot off the Press with Leigh ReynoldsThis month, our Hot off the Press guest is Leigh Reynolds. Leigh is FSHD Society’s Chief Program Strategist. She discusses updates about all things FSHD research and developments in the research field and gives a preview of our Giving Tuesday Radiothon! Don’t miss this great conversation with Leigh and our host, Tim Hollenback.
You can find the Needs Assessment Survey at: https://www.fshdsociety.org/needs-assessment/ and read Part One of our Year End blog post series here: https://www.fshdsociety.org/journey-to-a-cure/
2022-11-1735 minFSHD Straight Talk with Tim HollenbackFSHD Radio Hot off the Press with Amanda HillThis month, our Hot off the Press guest is Amanda Hill. We are excited to introduce you to Amanda – she is FSHD Society’s newest staff member as the Director of Research and Patient Engagement. Amanda has been part of the FSHD Society community for many years as the Colorado Chapter Director and volunteer leader. She will be sharing about her role as well as information about True Cost of FSHD.
PACT (Patients Accelerating Clinical Trials) is your onramp to participating in all types of research. Whether it’s completing surveys, joining a clinical trial, or joining the upcomin...
2022-09-2216 minFSHD Straight Talk with Tim HollenbackSpecial Edition Episode: National Walk & Roll to Cure FSHD Ambassador, Max Adler!Join our host Tim with our special guest, actor & advocate Max Adler! Listen in to hear more about Max and why the Walk & Roll to Cure FSHD means so much to him.
Max launched Team Mighty Max because he watched his Mom, Lisa, and Grandma Ruth struggle with FSH Muscular Dystrophy. Determined to do all he could so that no one would have to go through this ever again, he joined forces with the FSHD Society and determined to be a part of the solution.
"I watched my Mom and Grandma struggle with this disease, and...
2022-09-0513 minFSHD Straight Talk with Tim HollenbackFSHD Radio Hot off the Press with Beth Johnston: All About the Walk & Roll!Our Hot off the Press guest this month is Beth Johnston, FSHD Society's Chief Community Engagement Officer. She will be speaking all about the 2022 Walk & Roll to Cure FSHD - what it is, how you can be involved, and most importantly, why it matters! Together, we move toward a CURE and Beth will be sharing how participating in the Walk & Roll helps move us toward this goal!
Every 4th Thursday of the month we will bring you a short-form show that will bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and...
2022-08-2517 minFSHD Straight Talk with Tim HollenbackFSHD Radio Hot Off the Press with Leigh ReynoldsLeigh Reynolds, Chief Program Strategist for the FSHD Society, joins Tim to talk about all the activities patients and families can get involved in now! Learn more about PACT (Patients Accelerating Clinical Trials) initiatives such as Test FSHD and the True Cost of FSHD study, the Walk & Roll to Cure FSHD and more.
www.fshdsociety.org/testfshd
www.fshdsociety.org/true-cost
www.fshdsociety.org/fsh-events/walk-roll
2022-07-2934 minFSHD Straight Talk with Tim HollenbackFSHD Radio Hot Off the Press with June KinoshitaThis month's guest for our "Hot Off the Press" episode is June Kinoshita, Senior Director of Research and Patient Education at the FSHD Society. She will be talking to us about our True Cost of FSHD survey. This survey will be the first of it's kind in the U.S. and is aimed at discovering the financial burdens families with FSHD face due to their illness. The finding will influence government and private insurance policies that will affect whether you, as an individual living with FSHD, will have access to affordable treatments.
This may be one of the mo...
2022-05-2719 minFSHD Straight Talk with Tim HollenbackHot off the Press with Anna GilmoreIn this episode of the FSHD Radio Show, our host Tim will be talking with Anna Gilmore, FSHD Society's Regional Director for Community Engagement. Learn all about the upcoming FSHD Connect Conference, the 29th Annual FSHD Society International Research Congress, and the FSHD World Alliance meeting - all happening in June 2022 in Orlando, FL! Learn how YOU can participate and take a peek behind the scenes of all the planning.
2022 FSHD Connect conference information: https://www.fshdsociety.org/fsh-events/fshd-connect-conference/
International Research Congress information: https://www.fshdsociety.org/connect/worldfshdalliance/
World FSHD Alliance information...
2022-03-2418 minFSHD Straight Talk with Tim HollenbackCommunity Profiles: Lexi PappasThis month's guest for FSHD Radio: Community Profiles is Lexi Pappas. Lexi has been an advocate for the FSHD community for many years and is a Walk & Roll leader as well as a GenZ of FSHD admin. We can’t wait to share Tim and Lexi's great conversation!
Follow GenZ of FSHD on Instagram: https://www.instagram.com/genz_of_fshd/
For details about our Radio Show, click here: https://www.fshdsociety.org/fshd-radio/
2022-03-0952 minFSHD Straight Talk with Tim HollenbackHot off the Press with Beth JohnstonIn this episode of the FSHD Radio Show, our host Tim will be talking with Beth Johnston, FSHD Society’s Chief Community Engagement Officer. Learn all about the Chapter Program at FSHD Society and hear all the latest FSHD Society news with Tim and Beth!
Get involved: https://www.fshdsociety.org/fshd-events-calendar/
Find your local chapter: https://www.fshdsociety.org/connect/local-chapters/
Our short-form Hot off the Press episodes bring you the latest and greatest from the FSHD Society, including research updates, upcoming events, and important developments to keep you updated on all things FS...
2022-02-2423 minFSHD Straight Talk with Tim HollenbackFSHD Society CSO Jamshid Arjomand, PhDThis episode's guest is our chief science officer, Jamshid Arjomand, PhD! He’ll be sharing the latest and greatest in FSHD research, including news from the Clinical Trial Research Network investigators meeting that just happened last week in Virginia, what’s going on in drug development (that he’s allowed to divulge publicly), and more!
2021-11-1055 minFSHD Straight Talk with Tim HollenbackTalking about early-onset of FSHDThis month’s guests are Ally Roets and her son, Sam Ray. Together with Kristin Zwickau, they are co-leading our early-onset FSHD chapter for families that have members who developed symptoms of FSHD in early childhood. This form of FSHD brings unique challenges. We seek to connect early-onset families around the world through this chapter so that they can share their knowledge and advocate for research and treatments.
2021-10-201h 05FSHD Straight Talk with Tim HollenbackJamin' with Jamshid Arjomand, PhD, CSO FSHD SocietyOur guest this month is our very own Jamshid Arjomand, PhD, chief science officer. He’ll update you about the latest research and drug development advances (that he’s allowed to talk about). If you have questions about FSHD research, now’s your chance to get them answered!
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FSHD-LIFE11. Folge - Interview mit Eva HungerAuch FSHD-LIFE, der Podcast für Menschen, die mit FSHD leben, startet locker und entspannt in das Jahr 2021. Nachdem ihr in der letzten Folge euren eingesandten Stimmen und denen des gesamtes Podcast-Teams lauschen konntet, haben wir für die Folge zum Jahresbeginn einen Gast eingeladen, den Miriam und Johannes in einer lockeren, virtuellen Runde mit Fragen "gelöchert" haben.
Eva Hunger (evahunger.com) ist 30 Jahre alt, hat seit ihrer Geburt FSHD und ist nach verschiedenen Ausbildungen und Studiengängen, auf die sie im Interview auch näher eingeht, erfolgreicher Coach.
Sie erzählt von ihrem Werdegang, ihrer Arbeit, verrät aber au...
2021-01-3041 min
FSHD-LIFE10. Folge - Weihnachtsfolge und JahresrückblickFSHD-LIFE mit der 10. Podcast-Folge, in der wir das Jahr weihnachtlich und mit euren Stimmen ausklingen lassen wollen und dieses für uns alle turbulente Jahr 2020 noch einmal mit all seinen Höhen und Tiefen zu rekapitulieren.
Um etwas Abwechslung reinzubringen und unseren Podcast lebendiger und interaktiver zu gestalten hattet ihr die Möglichkeit uns eine Nachricht auf der Sprachbox zu hinterlassen und von eurem Jahr zu erzählen.
*FSHD-LIFE ist ein Podcast für Menschen, die mit FSHD leben - ihr! Daher freuen wir uns natürlich immer über Input, Dinge die wir vielleicht ansprechen können, Sachen d...
2020-12-2439 minFSHD Straight Talk with Tim HollenbackKent Drescher, PhD, co-director of the FSHD Society’s Bay AreaOur guest on this episode is Kent Drescher, PhD, co-director of the FSHD Society’s Bay Area chapter and a retired clinical psychologist. He will talk about acceptance and commitment therapy (ACT), which has been shown in a clinical trial to be beneficial to people with FSHD. He will discuss his own experience of living with FSHD, and share his past work working with veterans. Kent dives deep into ACT therapy. He describes in detail how it can change your life in many ways, physically and emotionally.
2020-10-151h 01FSHD Straight Talk with Tim HollenbackHoward Chabner, FSHD Society board vice-chair and retired disability rights lawyer, Melissa RiessThis week’s guests are Howard Chabner, FSHD Society board vice-chair and retired disability rights lawyer, Melissa Riess, a staff attorney at Disability Rights Advocates in Berkeley, and Dani Liptak and Carden Wyckoff, who have been outspoken advocates for disability rights in the community. We’ll reflect on the impact of the ADA and the many challenges that remain in the fight for full inclusion and equity.
2020-07-301h 04FSHD Straight Talk with Tim HollenbackFSHD patient and fitness trainer, Bill Herzberg & Mitch WadeThis month’s guests are Bill Herzberg and Mitch Wade, FSHD patient and fitness trainer, respectively, who are making waves in our community with their weekly fitness webinars. They’ll be discussing the strategies they have worked out over the years to successfully address a variety of issues that have resulted from Bill’s FSH muscular dystrophy.
2020-06-0457 minFSHD Straight Talk with Tim HollenbackFSHD Society board member Carden WyckoffThis month’s guest is Carden Wyckoff, FSHD Society board member and supreme champion of accessibility and leader who laughs in the face of limits. With her own podcast, “Freewheelin’ with CardenOfMilk“, Carden (@cardenofmilk) shines a new light on accessibility and thriving through any challenge.
Carden Wyckoff, podcaster
“Living with a progressive disease can have so many ups and downs, and my goal is to give voice and power to it all, knock down barriers so we can roll through life a little easier and build a community to do this together,” she says. “We’re going to deep di...
2020-05-071h 01
FSHD-LIFE9. Folge - Corona - Tipps und HinweiseFSHD-LIFE mit der 9. Podcast-Folge, in der sich alles um das aktuelle Thema "Corona-Pandemie" dreht.
Hier ein paar nützliche Links, die für euch neben unserem Geschnatter noch ein paar mehr Infos bereithalten:
- Aktuelle Hinweise zur Covid-19-Erkrankung für Patientinnen und Patienten mit neuromuskulären Erkrankungen (von Prof. Dr. Spuler und Dr. Gazzerro) https://www.mdc-berlin.de/de/hochschulambulanz-fuer-muskelkrankheiten
- Die DGM e. V. hat ebenfalls umfassende Tipps und Infos zusammengetragen, die man hier nachlesen kann: https://www.dgm.org/aktuelles/corona-ueberblick-hilfreiche-informationen-links
- bei spezifischeren Fragen oder dem Verdacht einer Infizierung hat das Robert-Koch-Institut eine Such...
2020-04-1734 minFSHD Straight Talk with Tim HollenbackA chat with Justin TurfTank VanLanduitJoin host Tim Hollenback for a chat with Justin TurfTank VanLanduit, who was diagnosed with FSHD in 2013 at the age of 33. “It was a blow to be told I have a degenerative neuromuscular disease that has no cure,” Justin recalls. “I’ve always been very active with sports, but worse than the realization that some of the things I enjoy could be taken away was thinking about how my diagnosis could greatly affect my family.” A few years after his diagnosis, Justin’s family participated in its first MDA Muscle Walk. He called the experience an “eye opener” and since then has particip...
2020-02-061h 08FSHD Straight Talk with Tim HollenbackFSHD Society Radio Telethon 2019 episode 3This episode features three interviews from the 2019 Giving Tuesday telethon event. First interview is with Kiley Higgs. Kiley is the Kansas City FSHD Society Chapter director and she is the manager for the clinical trial research network with UK Medical Center. The second interview is with Dave Lukas, The Chicagoland chapter director. Finally Beth Johnston, FSHD Society's Chief Community Development office talks about the chapters and Walk 'N Roll events.
2019-12-2950 minFSHD Straight Talk with Tim HollenbackFSHD Society Radio Telethon 2019 episode 1This episode highlights the first 3 interviews from the 2019 Giving Tuesday telethon event. This episode features interviews with FSHD Society's President and CEO, Mark Stone. FSHD Society's Chief Strategic Officer, June Kinoshita. The final interview is with Dr. Lou Kunkel. Dr. Kunkel is a renowned Harvard Scientist that discovered the Duchenne Muscular Dystrophy gene.
2019-12-2945 min
FSHD-LIFE7. Folge - Interview mit Nicole VoetInterview mit Dr. Nicole Voet: Sie ist eine niederländische Rehabilitationsmedizinerin, die ihre Doktorarbeit zum Thema Physiotherapie und kognitive Verhaltenstherapie bei FSHD geschrieben hat. Wir stellen ihr 15-Wochen-Programm vor, reden über Fatigue, Vitamin D und wie Judo uns beim „richtigen“ Stürzen helfen kann. Viel Spaß!
Für deutsche Untertitel:
https://www.youtube.com/watch?v=6wEo2V_2oxo&t=1124s
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2019-02-2600 minFSHD Straight Talk with Tim HollenbackJune Kinoshita, Chief Strategic Programs Officer of the FSHD Societyinterview with June Kinoshita, Chief Strategic Programs Officer of the FSH Society. This has been a breakthrough year for the FSH Society, with the launch of the FSHD Therapeutics Accelerator project, national chapter system, and signature Walk & Roll fundraiser. June will share the latest news on drug development and clinical trials, research advances and what they mean for you, and more. She’ll be happy to answer your questions, which you ask live on-air or post in comments below and on the FSH Society Facebook page
2019-01-301h 06FSHD Straight Talk with Tim HollenbackScientist-researcher, Amanda RickardAmanda Rickard--someone well known to the FSHD community as one of those exceptional scientists who love to help patients and families understand what's going on at the frontiers of FSHD research.
Amanda Rickard is a scientist focused on FSHD therapeutics development at Genea Biocells. She began her work on FSHD in Dr. Dan Miller’s lab at the University of Washington’s Institute for Stem Cell and Regenerative Medicine in Seattle. Three years ago she moved to San Diego to lead Biocells’ efforts toward identifying a disease-modifying treatment for FSHD patients. She also serves as an FSH Society volunte...
2019-01-301h 03FSHD Straight Talk with Tim HollenbackA conversation with Dave Lukas, an Illinois native who was diagnosed with FSHDThis month, our host Tim Hollenback has a conversation with Dave Lukas, an Illinois native who was diagnosed with FSH muscular dystrophy a little over three years ago. Dave has shared aspects of his journey with bracing and eloquent candor (and humor) over his Facebook page [LINK = https://www.facebook.com/dave.lukas.14]. Dave shares his story about how he transformed himself from feeling powerless to powerful [LINK TO BLOG POST] by volunteering for research toward a cure for FSHD, and as an advocate and leader in the Chicagoland FSHD community. We look forward to hearing his story!
2019-01-301h 00FSHD Straight Talk with Tim HollenbackGuests- pianist, Steven Blier & FSHD advocate, George PollockThis month’s radio show guest is Steven Blier, a pianist and go-to coach for some of the world’s most celebrated singers. Joining us also will be George Pollock, to tell us about his experiences riding in the cross-continental Race Across America this summer with Team FSHD Cycling.
In an interview with the New York Times, Steven says “Muscular dystrophy is not something I would recommend. But it is an amazing teacher. It shows you what you are made of. To live your life in a wheelchair, you have to man-up. To go on stage takes some guts...
2019-01-301h 22FSHD Straight Talk with Tim HollenbackPsychiatrist and FSHD advocate, Carol S. Birnbaum, MDOur guest tonight is Carol S. Birnbaum, MD, a psychiatrist in private practice in Cambridge, Massachusetts. She is a tireless advocate for the Society as an adviser and liaison with patients and families. In 2011, Dr. Birnbaum lost her mother to complications related to FSHD. She is eager to promote the Society in its search for a cure and to offer support and guidance for patients and their families. On our show tonight, she will respond to questions and comments shared by our Facebook communities.
Carol is a graduate of Bryn Mawr College and the University of Connecticut School o...
2019-01-301h 03FSHD Straight Talk with Tim HollenbackFirst show with FSHD Cycling team leader George PollockTonight we present the first live show of FSH Society Talk Radio. Host Tim Hollenback welcomes featured guest George Pollock. George is leader of Team FSHD Cycling, which will be competing in the grueling RAAM (Race Across America) in June. George will talk about what is entailed in preparing and training for such a distance event. We invite you to participate in the show and send us your questions for George. Also in this show, Tim shares his personal fight and diagnosis with FSHD. Learn about the upcomingWorld FSHD Day on June 20, as well as the FSH Society Family Day...
2019-01-3058 minFSHD Straight Talk with Tim HollenbackIntroduction to FSH Society RadioThis is the first episode of FSH Society radio. First you ask, "What is FSHD?" It is Facioscapulohumeral muscular dystrophy (FSHD). FSHD gets its name because the progressive loss of skeletal muscle is usually noticeable across facial (facio), back (scapula), and upper arm (humeral) muscles. This is a progressive disease and it has no cure or treatment...yet. In each episode, I invite you to come with me and share in my journey of not only my personal battle against this disease, but the story of the hundreds of thousands of others affected by it.
This episode I...
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FSHD-LIFE6. Folge - FSHD ErklärtWie funktioniert FSHD?
In dieser Folge erklären wir euch die Mechanismen von FSHD im Detail. Was ist DUX4 und wie zerstört es die Muskeln? Was sind Gene und Chromosomen? Wo ist der Unterschied zwischen FSHD 1 und FSHD 2?
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FSHD-LIFE5. Folge Anästhesie, SchulterfixationIn unserer heutigen Folge geht es um die Schulterblattfixation. Wir reden über Vor- und Nachteile eines solchen Eingriffs. Dabei spielt auch das Thema Anästhesie eine große Rolle.
Weiterführende Links:
Anästhesie: https://www.dgm.org/behandlung/anaesthesie
Notfallpass: https://www.dgm.org/publikationen/notfallpass-muskelkranke
Habt Ihr Wünsche, Kritik oder Ideen? Schreibt uns: podcast@fshd-life.de
Euer Podcast-Team.
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FSHD-LIFE4.Folge FSHD GenetikHeute geht es um Genetik!
Welche Gene sind defekt bei FSHD-Patienten?
Veerbe ich FSHD immer weiter?
Wie schwer könnte mein Kind betroffen sein?
Wer kann mich beraten?
Diesen und weiteren Fragen gehen Miriam und Johannes heute auf den Grund.
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FSHD-LIFE3.Folge FSHD-Vernetzung in EuropaHeute geht es um Europa und die Welt. Wenn ihr wissen wollt, wie in Sachen FSHD international zusammengearbeitet wird, dann hört unsere 3. Folge von FSHD-Life. Viel Spaß!
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FSHD-LIFE2. Folge - Patientenregister2. Folge - Patientenregister by FSHD-LIFE
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2018-06-1800 min
Medizin - Open Access LMU - Teil 21/22miR-411 is up-regulated in FSHD myoblasts and suppresses myogenic factorsBackground: Facioscapulohumeral muscular dystrophy (FSHD) is an autosomal dominant muscle disorder, which is linked to the contraction of the D4Z4 array at chromosome 4q35. Recent studies suggest that this shortening of the D4Z4 array leads to aberrant expression of double homeobox protein 4 (DUX4) and causes FSHD. In addition, misregulation of microRNAs (miRNAs) has been reported in muscular dystrophies including FSHD. In this study, we identified a miRNA that is differentially expressed in FSHD myoblasts and investigated its function. Methods: To identify misregulated miRNAs and their potential targets in FSHD myoblasts, we performed expression profiling of both miRNA and...
2013-01-0100 min