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FSH Society Radio Show

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This talk show features people, advocacy, research, and more from the FSH muscular dystrophy community. Sponsored by the nonprofit FSH Society.

This talk show features people, advocacy, research, and more from the FSH muscular dystrophy community. Sponsored by the nonprofit FSH Society.
More Information

Location:

United States

Description:

This talk show features people, advocacy, research, and more from the FSH muscular dystrophy community. Sponsored by the nonprofit FSH Society.

Twitter:

@fshsociety

Language:

English

Contact:

781-301-6060


Episodes

23: FSH Society Radio Episode 23

3/30/2019
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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. According to Ben's website: Livingston is internationally known as a neon/light sculptor. He is the...

Duration:01:11:13

22: FSH Society Radio Episode 22

2/27/2019
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This episode features 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 personal mission to gently remind each person she meets of the innate wellness that already resides...

Duration:01:12:36

22: FSH Society Radio Episode 22

2/27/2019
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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 personal mission to gently remind each person she meets of the innate wellness that already resides...

Duration:01:12:36

21: FSH Society Radio Episode 21

1/30/2019
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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 people, having seen her first husband decline and pass away from one such rare condition. When Dave...

Duration:01:11:33

20: FSH Society Radio Episode 20

1/30/2019
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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 & Roll fundraiser. June will share the latest news on drug development and clinical trials, research advances and what they mean for you, and more. She’ll be happy to answer your questions, which you ask live on-air or post in comments below and on...

Duration:01:06:35

19: FSH Society Radio Episode 19

1/30/2019
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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's going on at the frontiers of FSHD research. Amanda Rickard is a scientist focused on FSHD therapeutics development at Genea Biocells. She began her work on FSHD in Dr. Dan Miller’s lab at the University of Washington’s Institute for Stem Cell and Regenerative Medicine in Seattle. Three years ago she moved to San Diego to lead Biocells’...

Duration:01:03:54

18: FSH Society Radio Episode 18

1/30/2019
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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’ll share her life story and observations about living with FSHD, and most recently, working with a...

Duration:01:11:03

17: FSH Society Radio Episode 17

1/30/2019
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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 awareness of FSH and to show others anything is possible with enough determination and drive. Her...

Duration:01:03:05

16: FSH Society Radio Episode 16

1/30/2019
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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.

Duration:01:09:00

15: FSH Society Radio Episode 15

1/30/2019
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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 program because we believe there is great power in community. Working together, we inspire each other...

Duration:01:08:30

14: FSH Society Radio Episode 14

1/30/2019
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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, according to the company’s website. “Brand loyalists share his enthusiasm for everything being in...

Duration:01:03:13

13: FSH Society Radio Episode 13

1/30/2019
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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 powerless to powerful [LINK TO BLOG POST] by volunteering for research toward a cure for FSHD, and as an...

Duration:01:00:03

12: FSH Society Radio Episode 12

1/30/2019
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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 ask questions on the air by calling (949) 270-5953. Dr. Egert began her own personal study and...

Duration:01:06:40

11: FSH Society Radio Episode 11

1/30/2019
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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 is so great! We should be recording and sharing this with the rest of the community!” Their wish is...

Duration:01:01:39

10: FSH Society Radio Episode 10

1/30/2019
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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 research interests include the pathophysiology of neuromuscular disorders, encompassing nerve...

Duration:01:04:14

9: FSH Society Radio Episode 9

1/30/2019
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This episode of the FSH Society Radio show we welcome Justin Skeesuck and Patrick Gray form the book and film "I'll Push You." 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 the restroom. In the spring of 2012, Justin learned about the Camino de Santiago while watching...

Duration:01:20:35

8: FSH Society Radio Episode 8

1/30/2019
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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 will join Tim to answer your Facebook, Twitter, email and live chat room questions and comments. This...

Duration:01:10:57

7: FSH Society Radio Episode 7

1/30/2019
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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 series Switched at Birth (https://en.wikipedia.org/wiki/Switched_at_Birth_(TV_series)) . Max also...

Duration:01:04:38

6: FSH Society Radio Episode 6

1/30/2019
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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 Cures Institute (NACI), a drug discovery initiative anchored by a clinical trial network comprising...

Duration:01:02:46

5: FSH Society Radio Episode 5

1/30/2019
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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.html?mcubz=3) , Steven says “Muscular dystrophy is not something I would recommend. But it is an...

Duration:01:22:18