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<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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30: Meredith Huml, director of the North Carolina chapter
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 guest this month is Meredith Huml, director of the North Carolina chapter. Diagnosed at age 12 with a “disease she had never heard of,” Meredith faced the wrenching loss of her beloved dancing. Her younger brother Jonathan as diagnosed with FSHD as well, with symptoms that progressed even faster than hers. After years of struggling, she has not only come to turns with life with FSHD, she has t...
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<span><span class="js-time" data-epochtime="1576724738" data-format="short_date">Dec 19, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7430126-singer-songwriters-levi-benson-and-jenny-hasenjaeger"><div class="Episode-list-grid card-body pan">
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<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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29: Singer songwriters Levi Benson and Jenny Hasenjaeger
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FSHD Society radio welcomes singer songwriters Levi Benson and Jenny Hasenjaeger this month. They share an FSHD diagnosis and a love of music.
Levi Benson was featured earlier this year in FSHD Advocate and on our blog (https://www.fshdsociety.org/2019/07/05/more-than-meets-the-eye-and-ear/) . Since the time he performed his first childhood song, “I Love My Lips,” made famous by VeggieTales’ La...
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1hr 4m
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<span><span class="js-time" data-epochtime="1574306086" data-format="short_date">Nov 21, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7410847-from-nfl-films-alan-brown"><div class="Episode-list-grid card-body pan">
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<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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28: From NFL Films, Alan Brown
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Join host Tim Hollenback this Wednesday, October 30, at 9:00 pm ET on Facebook Live (https://www.facebook.com/FSHDSociety/) for a conversation with the fantastic Alan Brown. Alan, of Holicong, Pennsylvania, is the director of business development at NFL Films, the company that produces commercials, television programs, feature films, and documentaries for and about the National Football League ...
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58m
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<span><span class="js-time" data-epochtime="1572487937" data-format="short_date">Oct 31, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7382450-clinical-psychologist-dr-david-younger"><div class="Episode-list-grid card-body pan">
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<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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27: Clinical psychologist, Dr. David Younger
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Join radio host Tim Hollenback for a conversation with Dr. David Younger, a clinical psychologist based in Austin, Texas. He was diagnosed with FSHD at age four, the same time as his mother and grandmother were also found to have the condition. In a compelling blog post, he shared his personal journey of learning to accept his life with FSHD and moving beyond it to finding well-being and becomi...
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1hr 11m
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<span><span class="js-time" data-epochtime="1569771479" data-format="short_date">Sep 29, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7355272-former-singer-model-and-interior-designer-heather-green"><div class="Episode-list-grid card-body pan">
<div class="l-flex align-items-baseline gap-2 gap-md-3">
<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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26: Former singer, model, and interior designer, Heather Green
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Join radio host Tim Hollenback for our conversation with the fascinating Heather Green. You can read her story here (https://www.fshsociety.org/2019/08/the-journey-of-a-forensic-psychologist/) . A former singer, model, and interior designer, Heather embarked on a new career when her diagnosis with FSHD forced her to reassess her future. Childhood memories of a small-town murder mystery reawaken...
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1hr 13m
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<span><span class="js-time" data-epochtime="1567131764" data-format="short_date">Aug 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7275128-sue-aumiller-ohio-chapter-director"><div class="Episode-list-grid card-body pan">
<div class="l-flex align-items-baseline gap-2 gap-md-3">
<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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25: Sue Aumiller, Ohio Chapter director
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We have a conversation with Sue Aumiller, an Ohio woman who felt compelled to act when her son, and then her husband, were diagnosed with FSH muscular dystrophy. Barely a year later, she is director of the FSHD Society’s Columbus chapter, has a wildly successful Walk &amp; Roll to Cure FSHD under her belt, and is contributing articles to the FSHD Advocate. Talk about turning lemons into lemonade!  ...
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<span><span class="js-time" data-epochtime="1559185909" data-format="short_date">May 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7242709-guests-ora-and-isaac-prilleltensky-phd"><div class="Episode-list-grid card-body pan">
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<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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24: Guests Ora and Isaac Prilleltensky, PhD 
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Ora Prilleltensky, PhD, obtained her doctorate in counseling psychology from OISE at the University of Toronto. She is the former director of the major in Human and Social Development at the University of Miami and has also worked in a variety of clinical settings, including a child guidance clinic, a university counseling center and a rehabilitation hospital. She is the author or co-author of ...
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<span><span class="js-time" data-epochtime="1556162004" data-format="short_date">Apr 25, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7217795-features-guests-ryan-bindl-and-artist-ben-livingston-and-steve-kowalik"><div class="Episode-list-grid card-body pan">
<div class="l-flex align-items-baseline gap-2 gap-md-3">
<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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23: Features guests, Ryan Bindl and artist Ben Livingston and Steve Kowalik.
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This episode features a in studio guest, Ryan Bindl and an interview with Austin-based artist Ben Livingston (https://www.benlivingston.com/) and Steve Kowalik.
Ryan Bindl is a 5th grader that created a project for school that generated a positive impact to help the FSH Society.
Ben drew our attention earlier this year when he shared his video, “My miracle at Barton Springs,” on Facebook.
Accor...
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<span><span class="js-time" data-epochtime="1553963682" data-format="short_date">Mar 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7188016-acupuncturist-herbal-medicine-katelyn-michals"><div class="Episode-list-grid card-body pan">
<div class="l-flex align-items-baseline gap-2 gap-md-3">
<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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22: Acupuncturist &amp; Herbal Medicine, Katelyn Michals
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This episode we have an interview with Katelyn Michals, a national board-certified licensed acupuncturist who has been working with patients in the Greater Milwaukee Area since 2008. She graduated from the Midwest College of Oriental Medicine with a Master’s in Acupuncture and Herbal Medicine, and a bachelor’s in nutrition. Katelyn infuses her treatments with mind-body education, and is on a pe...
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<span><span class="js-time" data-epochtime="1551324177" data-format="short_date">Feb 28, 2019</span></span>
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1hr 12m
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<a class="text-decoration-none" href="/posts/7159874-ramsey-shahed-brandi-witt-dave-lukas-of-the-chicagoland-chapter"><div class="Episode-list-grid card-body pan">
<div class="l-flex align-items-baseline gap-2 gap-md-3">
<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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21: Ramsey Shahed, Brandi Witt &amp; Dave Lukas of the Chicagoland Chapter
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An interview with two people from the Chicagoland area who live with FSHD. Ramsey Shahed is a 21 year old student at DePaul University studying for his master’s in cybersecurity. He was diagnosed around ate 14 and has been thriving ever since.
Brandi Witt is married to Dave Lukas, director of the Chicagoland chapter. She understands the challenges of living with a rare disease more than most pe...
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1hr 11m
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<span><span class="js-time" data-epochtime="1548904796" data-format="short_date">Jan 31, 2019</span></span>
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1hr 11m
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<a class="text-decoration-none" href="/posts/7159345-june-kinoshita-chief-strategic-programs-officer-of-the-fshd-society"><div class="Episode-list-grid card-body pan">
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<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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20: June Kinoshita, Chief Strategic Programs Officer of the FSHD Society
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interview 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 &amp; 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’...
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1hr 6m
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<span><span class="js-time" data-epochtime="1548872336" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159342-scientist-researcher-amanda-rickard"><div class="Episode-list-grid card-body pan">
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<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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19: Scientist-researcher, Amanda Rickard
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Amanda Rickard--someone well known to the FSHD community as one of those exceptional scientists who love to help patients and families understand what&#39;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 ...
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<span><span class="js-time" data-epochtime="1548871902" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159337-skylar-conover-2015-ms-wheelchair-usa"><div class="Episode-list-grid card-body pan">
<div class="l-flex align-items-baseline gap-2 gap-md-3">
<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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18: Skylar Conover, 2015 Ms. Wheelchair USA
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muscular dystrophy (http://www.blogtalkradio.com/tags?q=muscular-dystrophy)
Join us on Thursday, November 1, 2018, for our live interview with Skylar Conover. As 2015 Ms. Wheelchair USA, Sklyar shared her journey as a young woman diagnosed with FSH muscular dystrophy and has become a national advocate. Since then, Skylar has married and become a parent. Recently she acquired a service dog. She’...
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1hr 11m
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<span><span class="js-time" data-epochtime="1548871655" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159329-taylor-quigg-of-the-philadelphia-chapter"><div class="Episode-list-grid card-body pan">
<div class="l-flex align-items-baseline gap-2 gap-md-3">
<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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17: Taylor Quigg of the Philadelphia Chapter
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Taylor Quigg is a wife and mother of two who lives in the suburbs of Philadelphia. Taylor was diagnosed with FSH in 2014 when she was eight weeks pregnant with her second daughter. She has worked hard to overcome the label and show her diagnosis doesn’t define her. Taylor is a proud Network Marketing Professional for a global health and wellness company. She works tirelessly everyday to spread ...
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1hr 3m
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<span><span class="js-time" data-epochtime="1548871268" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159312-kristin-duquette-former-u-s-paralympic-team-athlete-and-disability-rights-advocate"><div class="Episode-list-grid card-body pan">
<div class="l-flex align-items-baseline gap-2 gap-md-3">
<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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16: Kristin Duquette, former U.S. Paralympic team athlete and disability rights advocate
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Kristin Duquette, former U.S. Paralympic team athlete and disability rights advocate. A former FSH Society staffer, she served as a confidential assistant to the chief of staff of the National Endowment for the Arts under the Obama administration and currently works as a program analyst for the Department of Homeland Security. Join us as we chat with Kristin about her career and advocacy work.
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<span><span class="js-time" data-epochtime="1548870893" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159307-beth-johnston-leigh-reynolds-discuss-the-chapter-programs"><div class="Episode-list-grid card-body pan">
<div class="l-flex align-items-baseline gap-2 gap-md-3">
<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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15: Beth Johnston &amp; Leigh Reynolds discuss the chapter programs
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Beth Johnston and Leigh Reynolds, the dynamic duo who are spearheading the FSH Society’s national chapter program (https://www.fshsociety.org/connect-locally/fsh-society-chapters/) .
Led by volunteers and supported by FSH Society staff, the Chapter Program is our greatest opportunity to fund more research, connect more patients, and advance more progress. The FSH Society is investing in this pr...
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1hr 8m
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<span><span class="js-time" data-epochtime="1548870529" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159298-curt-calder-co-founder-of-ansoncalder"><div class="Episode-list-grid card-body pan">
<div class="l-flex align-items-baseline gap-2 gap-md-3">
<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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14: Curt Calder, co-founder of AnsonCalder
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Join us for an interview with Curt Calder, co-founder of AnsonCalder, (https://ansoncalder.com/) a leather accessories company that weds artisan materials and fine craftsmanship with minimalist, functional designs inspired by his experiences as a busy finance professional living with FSH muscular dystrophy. 
Curt’s love for intelligent design has quickly grown a cult following for Anson Calder,...
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1hr 3m
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<span><span class="js-time" data-epochtime="1548870140" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159295-a-conversation-with-dave-lukas-an-illinois-native-who-was-diagnosed-with-fshd"><div class="Episode-list-grid card-body pan">
<div class="l-flex align-items-baseline gap-2 gap-md-3">
<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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13: A conversation with Dave Lukas, an Illinois native who was diagnosed with FSHD
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This 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 power...
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<span><span class="js-time" data-epochtime="1548869866" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159273-jen-egert-phd-talks-about-mindfulness-based-cognitive-therapy-mbct"><div class="Episode-list-grid card-body pan">
<div class="l-flex align-items-baseline gap-2 gap-md-3">
<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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12: Jen Egert, PhD talks about Mindfulness Based Cognitive Therapy (MBCT)
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Join us on April 25th, 9:00 PM EST / 8:00 PM CST for a live, on-air interview with Jennifer Egert, Ph.D., a clinical psychologist with FSHD who offers mindfulness based psychotherapy and workshops in Mindfulness Based Cognitive Therapy (MBCT) and mindful approaches to cope with stress and anxiety. You can stream the show on BlogTalkRadio (http://www.blogtalkradio.com/fshsociety) or listen and a...
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<span><span class="js-time" data-epochtime="1548869618" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159262-group-conversation-with-the-ct-connections-group"><div class="Episode-list-grid card-body pan">
<div class="l-flex align-items-baseline gap-2 gap-md-3">
<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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11: Group conversation with the CT Connections group
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Join us for a live, on-air support group session with the regulars at CT Connections, the FSH Society’s member group based out of Connecticut.
For the past few months, the group has been meeting monthly via video conference to share friendship, humor, and a wealth of helpful tips for overcoming the impediments and inconveniences imposed by FSHD. A constant refrain of the group has been, “This i...
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<span><span class="js-time" data-epochtime="1548869172" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159254-dr-tahseen-mosaffar-director-of-the-mda-als-center-at-uca-irvine"><div class="Episode-list-grid card-body pan">
<div class="l-flex align-items-baseline gap-2 gap-md-3">
<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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10: Dr. Tahseen Mosaffar, director of the MDA ALS Center at UCA Irvine
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Our special guest in February will be Dr. Tahseen Mosaffar. Tahseen Mozaffar, MD, is director of the MDA ALS Neuromuscular Center at the University of California Irvine Medical Center. As a nationally recognized expert in his field, Mozaffar serves as a principal investigator and co-investigator in clinical trials of novel therapeutic drugs for FSHD, ALS, and other neuromuscular conditions. His...
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<span><span class="js-time" data-epochtime="1548868805" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159251-justin-skeesuck-and-patrick-gray-form-the-book-and-film-i-ll-push-you"><div class="Episode-list-grid card-body pan">
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<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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9: Justin Skeesuck and Patrick Gray form the book and film &quot;I&#39;ll Push You.&quot;
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This episode of the FSH Society Radio show we welcome Justin Skeesuck and Patrick Gray form the book and film &quot;I&#39;ll Push You.&quot;
Over the past 20+ years, a progressive neuromuscular disease has slowly taken away Justin’s ability to use his arms and legs. From each morning until night, Justin requires daily assistance in every aspect of life such as eating, getting dressed, bathing and even using ...
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<span><span class="js-time" data-epochtime="1548868474" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159243-carden-wyckoff-and-lexi-pappas"><div class="Episode-list-grid card-body pan">
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<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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8: Carden Wyckoff and Lexi Pappas
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On this episode, the featured guests are you the listener! We’ll be joined by FSHD ambassadors Carden Wyckoff and Lexi Pappas, who each have great stories to share. Host Tim Hollenback will take calls live on air from all of you who want to share your stories. If you have FSHD or are a family member or friend of someone who does, we want to hear from you. June Kinoshita from the FSH Society wil...
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1hr 10m
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<span><span class="js-time" data-epochtime="1548868126" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159238-actor-max-adler-fsh-society-honorary-board-member-and-advocate"><div class="Episode-list-grid card-body pan">
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<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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7: Actor Max Adler, FSH Society honorary board member and advocate
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We are thrilled to welcome actor Max Adler, FSH Society honorary board member and advocate. The 31-year-old film and television actor first achieved national recognition for his role as Dave Karofsky (https://en.wikipedia.org/wiki/Dave_Karofsky) on the hit television series Glee (https://en.wikipedia.org/wiki/Glee_(TV_series)) . Another prominent role was the character Tank on the television se...
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1hr 4m
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<span><span class="js-time" data-epochtime="1548867758" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159221-fshd-society-s-ceo-mark-stone"><div class="Episode-list-grid card-body pan">
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<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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6: FSHD Society&#39;s CEO, Mark Stone
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Mark Stone began his tenure as CEO and President of the FSH Society in September.  Stone is a leading executive in health care-related non-profit organizations, having served as an executive leader of research-focused patient advocacy groups for the past 13 years, most recently as the CEO of NephCure Kidney International.  During his tenure at NephCure, Stone launched the NephCure Accelerating ...
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1hr 2m
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<span><span class="js-time" data-epochtime="1548867232" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159216-guests-pianist-steven-blier-fshd-advocate-george-pollock"><div class="Episode-list-grid card-body pan">
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<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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5: Guests- pianist, Steven Blier &amp; FSHD advocate, George Pollock
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This 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 (http://www.nytimes.com/2013/05/11/opinion/nocera-the-man-at-the-piano.htm...
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<span><span class="js-time" data-epochtime="1548866893" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159210-charis-l-himeda-phd"><div class="Episode-list-grid card-body pan">
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<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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4: Charis L. Himeda, PhD
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Charis L. Himeda, PhD, is Research Assistant Professor at the Center for Molecular Medicine at the University of Nevada, Reno School of Medicine. She has worked in the fields of myogenesis and muscle disease for many years, and is currently using cutting-edge technologies to examine mechanisms of epigenetic dysregulation in FSHD muscle cells and explore potential avenues of therapy. 
In 2016, D...
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59m
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<span><span class="js-time" data-epochtime="1548866451" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159204-psychiatrist-and-fshd-advocate-carol-s-birnbaum-md"><div class="Episode-list-grid card-body pan">
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<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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3: Psychiatrist and FSHD advocate, Carol S. Birnbaum, MD
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Our 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 fa...
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<span><span class="js-time" data-epochtime="1548865784" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159202-nba-s-brooklyn-nets-and-as-founder-of-the-chris-carrino-foundation-chris-carrino"><div class="Episode-list-grid card-body pan">
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<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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2: NBA’s Brooklyn Nets and as founder of the Chris Carrino Foundation, Chris Carrino
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Chris is the voice of the NBA’s Brooklyn Nets and as founder of the Chris Carrino Foundation, an outspoken advocate for FSH muscular dystrophy. We will hear his story—how he embarked on his career as a sports broadcaster, keys to success in such a high-pressure job, observations about the game—as well as his FSHD journey. How did he learn he has FSHD, and why did he choose to keep his diagnosis...
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<span><span class="js-time" data-epochtime="1548865657" data-format="short_date">Jan 30, 2019</span></span>
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<a class="text-decoration-none" href="/posts/7159121-first-show-with-fshd-cycling-team-leader-george-pollock"><div class="Episode-list-grid card-body pan">
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<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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1: First show with FSHD Cycling team leader George Pollock
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Tonight 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 (https://www.fshsociety.org/2017/02/team-fshd-cycling-race-across-america/) , 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 di...
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<span><span class="js-time" data-epochtime="1548863117" data-format="short_date">Jan 30, 2019</span></span>
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<img srcset="https://audioboom.com/i/39832585/75x75/c 75w, https://audioboom.com/i/39832585/150x150/c 150w, https://audioboom.com/i/39832585/300x300/c 300w, https://audioboom.com/i/39832585/600x600/c 600w, https://audioboom.com/i/39832585/1400x1400/c 1400w" sizes="(max-width: 400px) 64px, 96px" style="background-color: #4c181b; max-width: 96px; width: 15cqw;" class="js-img-bg ratio-square rounded-1" loading="lazy" src="https://audioboom.com/i/39832585/1400x1400/c" />
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1: Introduction to FSH Society Radio
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This is the first episode of FSH Society radio. First you ask, &quot;What is FSHD?&quot; 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 co...
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<span><span class="js-time" data-epochtime="1548803424" data-format="short_date">Jan 29, 2019</span></span>
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