FSHD Straight Talk with Tim Hollenback

Dec 10 2024 151 ep. 51 mins 19
FSHD Straight Talk with Tim Hollenback Podcast artwork

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.

  Health & Fitness  Science  Society & Culture
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137: BetterLife FSHD Can Help You Back, FSHD Straight Talk with Amy Bekier and Kayliegh Worek

Dec 10 2024 46 mins  
You’ve seen the social media posts and heard the ads, now join us for a deep dive into BetterLife FSHD. This week, Tim is joined by Amy Bekier, BetterLife FSHD Focus Group Member, and Kayleigh Worek, BetterLife Program Manager. Together, they discuss: ––How BetterLife uses surveys to collect comprehensive data from platform users ––How survey data can match users with cl

136: Notes of Gratitude with Gracie Caggiano and Ben Livingston

Nov 28 2024 78 mins  
Today’s special episode spotlights two gifted musicians whose artistry inspires gratitude and reflection. Gracie Caggiano, a Kansas City-based singer-songwriter, shares her unique approach to crafting soulful, poetic music that blends intricate guitar work with heartfelt lyrics. Ben Livingston, a multi-talented Austin artist, talks about his eclectic sound, his love for collabora

135: FSHD Cannot Stop an Adventurous Spirit with Don Burke, FSHD Straight Talk

Nov 12 2024 63 mins  
“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 yea

134: Minutes Matter: Early Onset Advocacy with Ally, Debbie & Kristin

Oct 22 2024 61 mins  
In this illuminating roundtable, Tim talks with Ally Roets, Debbie Eggleston, and Kristin Zwickau, the passionate moms leading the Early Onset Chapter. In addition to discussing how differently FSHD progresses in kids versus adults, Ally, Debbie, and Kristin touch on their past and upcoming advocacy efforts, the importance of changing clinical trial designs, and parenting in rare d

133: Life Re-Written: Jumping in After Diagnosis with Michael King

Oct 08 2024 49 mins  
Join host Tim Hollenback for a phenomenal conversation with Michael King, the new Chapter Director for North Carolina. A go-getter by nature, Michael went from advocating for his health and a diagnosis to experiencing life after diagnosis to his fullest potential. In addition to attending Connect 2024, Michael spearheaded the North Carolina Walk & Roll and helped his F3 friends

132: 2024 Walk & Roll Celebration!

Sep 21 2024 59 mins  
Happy International Walk & Roll Day! 🎉 In today’s special episode of FSHD Straight Talk, Tim interviews amazing Walk & Roll leaders to celebrate. Tune in as Mary Mauch and Suzy Kosten from Chicago, Ann Kolakowski from the Mid-Atlantic region, and Michael King from North Carolina share their stories and motivations for leading Walk & Rolls. Watch the episode on Fac

131: Find Your Person and Your Passion: FSHD Straight Talk with Brittany Lauro

Sep 10 2024 57 mins  
Join host Tim Hollenback and guest Brittany Lauro for this honest conversation about love, relationships, and FSHD. A Team Captain and volunteer for the Sacramento Walk & Roll, Brittany is a world traveler who turned to photography as FSHD affected her ability to walk and hike. In addition to discussing the importance of spousal support, Brittany shares humorous anecdotes from

130: Home Safety & Respiratory Wellness with Dan Wilson

Aug 27 2024 54 mins  
In this episode, host Tim Hollenback talks with Dan Wilson, a retired respiratory therapist and NASCAR enthusiast. In addition to discussing resources for home safety and building support networks to help with FSHD’s relentless progression, Dan discusses his hope to build an FSHD community in the Indianapolis area. FSHers of Indiana, if you’re listening, reach out! On the seco

129: I Never Thought to Say No with Mary Beth McCabe

Aug 13 2024 45 mins  
Meet Mary Beth McCabe, the passionate Captain of Team McCabe and the NJ Shore Walk & Roll Leader. As host Tim Hollenback drums up support for the 2024 Walk & Roll season, hear how Mary Beth got involved and learned to host a successful fundraiser. Mary Beth is a hoot, a holler, and a half. Don’t miss this fun and informative episode. On the second and fourth Tuesday of e

128: Find Catharsis Through Writing and Art: FSHD Straight Talk with Rob Stemple

Jul 23 2024 46 mins  
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 star