117: Transforming Disability Representation in the Film Industry: The Making of Good Bad Things
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...
38m Feb 27, 2024
38m
116: FSHD Radio: Jane Nemke, Founder of Designs to Thrive
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...
50m Feb 13, 2024
50m
115: FSHD Radio with Marisa Spain
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...
53m Jan 25, 2024
53m
114: FSHD Radio: Community Profiles with Chelsea Moeller
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...
45m Jan 16, 2024
45m
113: Project Mercury, A Global Effort in FSHD Treatment Delivery
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...
20m Dec 28, 2023
20m
112: Community Profiles: Michael Osborne - An FSHD Connection on the Baseball Field
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 ...
40m Dec 12, 2023
40m
111: My Cause My Cleats with Emma Weatherley
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, which encourages NFL players to support meani...
18m Nov 30, 2023
18m
110: Thanksgiving Special
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.
1hr 15m Nov 23, 2023
1hr 15m
109: FSHD Radio Show Community Profiles: Donna Russo - Actress, Dancer, Choreographer
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, Donna plays the lead in the international web ...
50m Oct 10, 2023
50m
108: FSHD Radio Hot off the Press: Mel Hayes of Fulcrum with a REACH Trial Update
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. Catch a new Hot off the Press episode on the 4th T...
12m Sep 28, 2023
12m
107: FSHD Radio Show Community Profiles: Jenny and Tony Teel, Thriving in an Interabled Marriage
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 Community Profiles episodes on the 2nd Tuesday of...
50m Sep 12, 2023
50m
106: FSHD Radio Hot off the Press: Max Adler on the LA Walk & Roll
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 Stanger will be at the LA Walk & Roll on September ...
13m Aug 24, 2023
13m
105: FSHD Radio Show Community Profiles: Ryan Levinson, Sailor & FSHD Voyager
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 determination has never allowed his diagnosis to stand in...
1hr 1m Aug 08, 2023
1hr 1m
104: FSHD Radio Hot off the Press: the 2023 Walk & Roll to Cure FSHD with Beth Johnston
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 Walk & Roll to Cure FSHD is the only signature ...
20m Jul 27, 2023
20m
103: FSHD Radio Show Community Profiles: with Beverly Weurding of the Wheelchair Dancers Organization
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 founded the Wheelchair Dancers Organization, enabling...
50m Jul 11, 2023
50m
102: FSHD Radio Hot off the Press: IRC 2023 Recap
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 and collaborate with one another. Check out this ...
38m Jun 22, 2023
38m
101: World FSHD Day: Mel Hayes, Fulcrum Therapeutics
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.
11m Jun 20, 2023
11m
101: World FSHD Day: Dr. Nizar Saad, Nationwide Children's Hospital
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!
14m Jun 20, 2023
14m
101: World FSHD Day: Raj Badiani, FSHD UK
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.
14m Jun 20, 2023
14m
101: World FSHD Day: Emma Weatherley, FSHD Global
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!
42m Jun 20, 2023
42m
101: World FSHD Day: Dr. Corrie Erasmus, Pediatric Neurologist
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.
16m Jun 20, 2023
16m
101: World FSHD Day: Jack Gerblick, Board Member & Atlanta Chapter Leader
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 FSHD awareness!
14m Jun 20, 2023
14m
101: World FSHD Day: Neil Camarta, FSHD Canada Foundation
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!
14m Jun 20, 2023
14m
100: FSHD Radio Show Community Profiles: Lauren "Lolo" Spencer - Actress & Disability Advocate
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, model, author, and disability advocate, and her new...
49m Jun 13, 2023
49m
99: Hot off the Press: Plans for World FSHD Day 2023
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. We have a lot in store for the month of June! ...
10m May 25, 2023
10m
98: FSHD Radio Show Community Profiles: All About Adoption with Deb Calhoun and Jim & Mary Albert
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 doesn’t get the attention it deserves! Catch our C...
1hr 5m May 09, 2023
1hr 5m
97: FSHD Radio Hot off the Press: Amanda Hill on the New Era of Clinical Trials
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 about your clinical trial experiences! Here i...
20m Apr 27, 2023
20m
96: Community Profiles with Hip-Hop Artist Apex Frazier
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. Catch our Community Profiles episodes on the 2...
1hr Apr 11, 2023
1hr
95: FSHD Radio Hot off the Press: Dr. Amy Halseth Answers Your Questions about Avidity’s FORTITUDE Trial
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 trial. Amy sat down Leigh Reynolds of the FSHD Soc...
29m Mar 23, 2023
29m
94: Community Profiles: Chip Wilson
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 our Community Profiles episodes on the 2nd Tue...
47m Mar 14, 2023
47m
93: FSHD Radio Hot off the Press with Jamshid Arjomand, PhD
This 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...
31m Feb 23, 2023
31m
92: Community Profiles: Paul Ronson
This month’s guest is Paul Ronson of Suffolk, England, a radio host who lives with FSHD. He is a presenter for East Point Radio, a station broadcast throughout the UK, and during his extensive radio career, Paul has helped discover music artists like Howard Jones. In this episode, he shares stories about his fascinating career and how he has adapted to life with FSHD. Catch our Community Profi...
59m Feb 14, 2023
59m
91: FSHD Radio Hot off the Press with Jared Jacobsen
Our 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...
29m Jan 26, 2023
29m
90: FSHD Radio Show: Community Profiles with Tim Hollenback
To 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!
51m Jan 10, 2023
51m
89: FSHD Radio: End of Year Episode with Mark Stone
Join 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...
1hr 2m Dec 13, 2022
1hr 2m
88: FSHD Radio Hot off the Press with Leigh Reynolds
This 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.fshdsocie...
36m Nov 17, 2022
36m
87: Community Profiles: Kristin Duquette
This month, our guest is Kristin Duquette. She is a five-time American Paralympic Record Holder in swimming and the former US Team Captain for the 2010 Greek Open. She is living with FSHD and is a disability advocate. Listen in to her great conversation with Tim to hear about her amazing journey. Catch our Community Profiles episodes on the 2nd Tuesday of each month. Listen on your favorite po...
1hr 5m Nov 08, 2022
1hr 5m
86: Hot Off the Press with Ally Roets and Kristin Zwickau
This month we have two great guests, Ally Roets and Kristin Zwikau, who are leading the charge with our early-onset and pediatric FSHD families. In addition to coordinating our international early-onset chapter, Ally hosts our monthly Parents Roundtable and hotline. They're with us on this episode to talk about the M.O.V.E. Study and the great need for pediatric families to get involved.
26m Oct 27, 2022
26m
85: Community Profiles: Ranae Beeker
This month, our guest is Ranae Beeker. Ranae is a retired RN, one of leaders of new Women on Wellness virtual group and a volunteer with FSHD Society, and a person with FSHD. This photo shows Ranae at the 2022 Pacific Northwest Walk & Roll to Cure FSHD! Listen in to her great conversation with our host Tim! In this episode, Ranae talks about our Women on Wellness group. You can join the next m...
52m Oct 11, 2022
52m
84: FSHD Radio Hot off the Press with Amanda Hill
This 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 (https://www.fshdsociety.org/about-us/our-team/) 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 (https://www.fshdsociety.org/connect/local-chapters/) a...
17m Sep 22, 2022
17m
83: Community Profiles: Actress Madison Ferris
This month, our guest is Broadway actress Madison Ferris! She played Laura Wingfield in The Glass Menagerie on Broadway, and she was the first wheelchair user to play a lead on Broadway! You may have also seen her on an episode of Law and Order: Special Victims Unit. She is living with FSHD and we can't wait to share this special episode with you! You can see Madison in the play All of Me at B...
1hr 4m Sep 13, 2022
1hr 4m
82: Special 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 FSH...
14m Sep 05, 2022
14m
81: FSHD Radio Hot off the Press with Beth Johnston: All About the Walk & Roll!
Our Hot off the Press guest this month is Beth Johnston (https://www.fshdsociety.org/about-us/our-team/) , FSHD Society's Chief Community Engagement Officer. She will be speaking all about the 2022 Walk & Roll to Cure FSHD (https://www.fshdsociety.org/fsh-events/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 ...
18m Aug 25, 2022
18m
80: Community Profiles: Claire Szabo-Cassella
This month, our Community Profiles guest is Claire Szabo-Cassella of Phoenix, Arizona, writer of the Red Scooter Diaries blog. Claire and her husband Lou had a great conversation with our host, Tim. We can't wait to share it with you! You can find the video interview of this episode on our YouTube page (https://youtu.be/4ZP_Jod1UJk) . For details about our Radio Show, click here: https://www....
55m Aug 09, 2022
55m
79: FSHD Radio Hot Off the Press with Leigh Reynolds
Leigh 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.o...
34m Jul 29, 2022
34m
78: Community Profiles: Dylan King
This month's guest for our Community Profiles podcast episode is Dylan King, a Marine Corps veteran who lives with FSHD. Dylan shares his diagnosis story, how his FSHD affected his military career, and how he is using his love of fitness to thrive. He is excited to share his story and his fitness expertise with the FSHD community, and we can't wait to share Tim and Dylan's great conversation w...
1hr Jul 12, 2022
1hr
77: FSHD Radio Hot Off the Press with June Kinoshita
Tim speaks with June Kinoshita, FSHD Society's Senior Director of Research and Patient Education, about our True Cost of FSHD survey
20m May 27, 2022
20m
76: Community Profiles: Michaela Walker
If you want to learn more about the FSHD CTRN and the MOVE and MOVE+ studies, this Radio Show episode is for you! This month's guest for our Community Profiles podcast episode is Michaela Walker, Research Project Manager for the FSHD CTRN and the MOVE and MOVE+ studies. Michaela will tell us all about the CTRN, who can be involved the MOVE study, and why it's so important for the FSHD community...
48m May 10, 2022
48m
75: Hot off the Press with Dr. David Younger
Our guest is Dr. David Younger, speaking to us about why he has chosen to become one of our most active community members. David volunteers his time, talents, and treasure to support the work of the FSHD Society in a myriad of ways and we are all the better for it! Our short-form Hot off the Press episodes bring you the latest and greatest from the FSHD Society, including research updates, upc...
20m Apr 28, 2022
20m
74: Community Profiles: Christel Rohrs
This month's guest for FSHD Radio: Community Profiles is Christel Rohrs. Christel shares her story with FSHD and how she continues to thrive while living with her diagnosis. For details about our Radio Show, click here: https://www.fshdsociety.org/fshd-radio/ (https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqbVEwcEpwYnJRdDkteEJRc2hZS01IYWhCeG1ld3xBQ3Jtc0ttQm5WazZUT...
1hr 4m Apr 12, 2022
1hr 4m