This talk show features people, advocacy, research, and more from the FSH muscular dystrophy community. Sponsored by the FSHD Society and made possible by our fabulous host and member of the FSHD community, Tim Hollenback.
…
continue reading
FSHD-LIFE, der Kanal für alle, die mit FSHD leben. Für Feedback schreibt uns an podcast@fshd-life.de.
…
continue reading
Welcome to the official Podcast of FSHSchmo’s Amazing Tabletop Stream. We enjoy playing Degenesis, Shadow of the Demon Lord, D&D 5e, The One Ring 2e, and more! We use the VTT Fantasy Grounds Unity & the sound software Syrinscape. All games are streamed live over at http://twitch.tv/fshschmo and you can join our Discord server here - https://discord.gg/7RMAXfgSqd - to chat with us between streams.
…
continue reading
A weekly podcast for our Fantasy Sports Help Newsletters. - Our Newsletters are offer player news and notes, start/sit advice, position rankings, add/drop information, and other valuable services!- FantasySportsHelp.com | Subscribe to Our Newsletter for more info! Follow us on Twitter @FSHsports
…
continue reading
Faith, science, and history integrated. Each episode, Dr. Sharon Grant sits down with experts in various fields of faith, science and history in order to better understand the questions that drive our ideologies.
…
continue reading
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 i…
…
continue reading
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. …
…
continue reading
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, y…
…
continue reading
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 sy…
…
continue reading
1
117: Transforming Disability Representation in the Film Industry: The Making of Good Bad Things
38:14
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 inspi…
…
continue reading
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 …
…
continue reading
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 s…
…
continue reading
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 r…
…
continue reading
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…
…
continue reading
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 diagnosi…
…
continue reading
FSHD is in the national spotlight! Emma Weatherley, Managing Director of FSHD Global, joins Tim to share exciting news: Michael Dickson of the Seattle Seahawks is raising FSHD awareness. The NFL player has chosen FSHD Global, our Australian counterpart and fellow Project Mercury member, as his nominated charity for the “My Cause My Cleats” campaign…
…
continue reading
1
110: Thanksgiving Special
1:15:45
1:15:45
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
1:15:45
Happy Thanksgiving! We’re so grateful to have the privilege to serve the FSHD community. This special Thanksgiving broadcast is our way of saying thank you to everyone who helps make our community so strong and allows us to keep moving closer toward treatments and a cure.Por FSHD Straight Talk
…
continue reading
This 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,…
…
continue reading
Earlier 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. Catc…
…
continue reading
1
107: FSHD Radio Show Community Profiles: Jenny and Tony Teel, Thriving in an Interabled Marriage
50:28
This 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 Com…
…
continue reading
Max 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 Stan…
…
continue reading
1
105: FSHD Radio Show Community Profiles: Ryan Levinson, Sailor & FSHD Voyager
1:01:30
1:01:30
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
1:01:30
This 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 determinati…
…
continue reading
The 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 W…
…
continue reading
1
103: FSHD Radio Show Community Profiles: with Beverly Weurding of the Wheelchair Dancers Organization
49:36
For this month’s Community Profiles episode, we welcome Beverly Weurding, the visionary behind the Wheelchair Dancers Organization. Diagnosed with Limb Girdle Muscular Dystrophy at the age of 55, Beverly was navigating life as a new wheelchair user at a time when many contemplate retirement. Empowered by her physical therapist’s support, she founde…
…
continue reading
You 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 an…
…
continue reading
In 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.…
…
continue reading
In 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!Por FSHD Straight Talk
…
continue reading
Next 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.Por FSHD Straight Talk
…
continue reading
Emma 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!Por FSHD Straight Talk
…
continue reading
Up 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.Por FSHD Straight Talk
…
continue reading
Up 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 …
…
continue reading
It’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!Por FSHD Straight Talk
…
continue reading
1
100: FSHD Radio Show Community Profiles: Lauren "Lolo" Spencer - Actress & Disability Advocate
49:06
We’re thrilled to have Lauren “Lolo” Spencer as our Community Profiles guest this month! Lauren plays Jocelyn on the popular HBO series The Sex Lives of College Girls and is the founder and CEO of Live Solo, a lifestyle brand dedicated to young adults with disabilities who seek independence and self-empowerment. Lauren is a phenomenal actress, mode…
…
continue reading
Did 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.…
…
continue reading
1
98: FSHD Radio Show Community Profiles: All About Adoption with Deb Calhoun and Jim & Mary Albert
1:05:31
1:05:31
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
1:05:31
Family 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 does…
…
continue reading
1
Shadow of the Dragon Queen PM - Episode 10 Part 3
2:55:56
2:55:56
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
2:55:56
*** Due to some internet issues on my end, this episode is broken into 3 parts *** ** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://d…
…
continue reading
*** Due to some internet issues on my end, this episode is broken into 3 parts *** ** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://d…
…
continue reading
*** Due to some internet issues on my end, this episode is broken into 3 parts *** ** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://d…
…
continue reading
1
Shadow of the Dragon Queen PM - Episode 9
2:17:29
2:17:29
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
2:17:29
** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…
…
continue reading
1
Shadow of the Dragon Queen PM - Episode 8
3:06:35
3:06:35
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
3:06:35
** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…
…
continue reading
1
Shadow of the Dragon Queen PM - Episode 7
3:04:16
3:04:16
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
3:04:16
** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…
…
continue reading
1
Shadow of the Dragon Queen PM - Episode 6
3:12:10
3:12:10
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
3:12:10
** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…
…
continue reading
1
Shadow of the Dragon Queen PM - Episode 5
3:20:52
3:20:52
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
3:20:52
** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…
…
continue reading
1
Shadow of the Dragon Queen - Episode 11
2:54:19
2:54:19
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
2:54:19
** Played via Fantasy Grounds and streamed live Sundays at 9:00 AM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…
…
continue reading
1
Shadow of the Dragon Queen - Episode 10
1:58:24
1:58:24
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
1:58:24
** Played via Fantasy Grounds and streamed live Sundays at 9:00 AM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…
…
continue reading
1
Shadow of the Dragon Queen - Episode 9
1:58:17
1:58:17
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
1:58:17
** Played via Fantasy Grounds and streamed live Sundays at 9:00 AM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…
…
continue reading
April’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…
…
continue reading
1
96: Community Profiles with Hip-Hop Artist Apex Frazier
1:00:54
1:00:54
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
1:00:54
This month’s community profiles guest is Apex Frazier. Apex is a hip-hop artist living in Southern Ontario who has battled FSHD for the past five years. In this episode, Apex talks with Tim about dealing with the aggressive onset of FSHD while still in high school and how his experiences have shaped his identity as an individual and as a musician. …
…
continue reading
1
95: FSHD Radio Hot off the Press: Dr. Amy Halseth Answers Your Questions about Avidity’s FORTITUDE Trial
28:58
Have 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 tri…
…
continue reading
This month, we’re honored to have entrepreneur and philanthropist Chip Wilson as our Community Profiles guest! Chip is the founder of Lululemon and has committed $100 million to targeted FSHD research through his mission-driven organization, SOLVE FSHD. In this episode, Chip talks with Tim about living with FSHD and the future of SOLVE FSHD. Catch …
…
continue reading
1
Shadow of the Dragon Queen PM - Episode 4
3:05:28
3:05:28
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
3:05:28
** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…
…
continue reading
1
Shadow of the Dragon Queen - Episode 8
3:00:48
3:00:48
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
3:00:48
** Played via Fantasy Grounds and streamed live Sundays at 9:00 AM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…
…
continue reading
1
Shadow of the Dragon Queen - Episode 7
2:54:22
2:54:22
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
2:54:22
** Played via Fantasy Grounds and streamed live Sundays at 9:00 AM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…
…
continue reading
1
Shadow of the Dragon Queen PM - Episode 3
2:49:55
2:49:55
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
2:49:55
** Played via Fantasy Grounds and streamed live Sundays at 7:00 PM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…
…
continue reading
1
Shadow of the Dragon Queen - Episode 6
2:23:46
2:23:46
Reproducir más Tarde
Reproducir más Tarde
Listas
Me gusta
Me gusta
2:23:46
** Played via Fantasy Grounds and streamed live Sundays at 9:00 AM CST at http://twitch.tv/fshschmo. ** Subscribe to our podcast FSHSchmo's Amazing Tabletop Podcast on iTunes, Google Music, Stitcher, & Podbean ** Twitch - http://twitch.tv/fshschmo Discord - https://discord.gg/7RMAXfgSqd Facebook - https://www.facebook.com/FSHSchmo Twitter - https:/…
…
continue reading