FSHD Straight Talk with Tim Hollenback

Join host Tim Hollenback for a chat with Justin TurfTank VanLanduit, who was diagnosed with FSHD in 2013 at the age of 33.  “It was a blow to be told I have a degenerative neuromuscular disease that has no cure,” Justin recalls. “I’ve always been very active with sports, but worse than the realization that some of the things I enjoy could be taken away was thinking about how my diagnosis could gre...

Join radio host Tim Hollenback on the show this month is FSHD research rock star Scott Harper, PhD , a leader in the effort to develop gene therapy. Harper is principal investigator at the Center for Gene Therapy at the Research Institute at Nationwide Children’s Hospital, and associate professor of pediatrics at the Ohio State University College of Medicine, Columbus, Ohio. He is a molecular biol...

This episode features three interviews from the 2019 Giving Tuesday telethon event. First interview is with Kiley Higgs. Kiley is the Kansas City FSHD Society Chapter director and she is the manager for the clinical trial research network with UK Medical Center. The second interview is with Dave Lukas, The Chicagoland chapter director. Finally Beth Johnston, FSHD Society's Chief Community Developm...

This episode highlights the interviews from the 2019 Giving Tuesday telethon event. Episode 2 features interviews with NFL Film's Director of Business, Alan Brown. Then a great conversation with Psychologist and mindfulness coach Jen Egert. Final interview is with the voice of the Brooklyn Nets Chris Carrino. 

This episode highlights the first 3 interviews from the 2019 Giving Tuesday telethon event. This episode features interviews with FSHD Society's President and CEO, Mark Stone. FSHD Society's Chief Strategic Officer, June Kinoshita. The final interview is with Dr. Lou Kunkel. Dr. Kunkel is a renowned Harvard Scientist that discovered the Duchenne Muscular Dystrophy gene.

 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 turn...

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 . Since the time he performed his first childhood song, “I Love My Lips,” made famous by VeggieTales’ Larry the Cucumber, Levi Benson’s lips have been crooning tunes. Those on the l...

Join host Tim Hollenback this Wednesday, October 30, at 9:00 pm ET on Facebook Live 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 (NFL). Alan has FSHD in his family. “My gre...

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 becoming...

Join radio host Tim Hollenback for our conversation with the fascinating Heather Green. You can read her story here . 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 reawakened her fascination with crime and Heather decided to pursue degrees in forensic...

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 & Roll to Cure FSHD under her belt, and is contributing articles to the FSHD Advocate. Talk about turning lemons into lemonade! ...

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 fou...

This episode features a in studio guest, Ryan Bindl and an interview with Austin-based artist Ben Livingston 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...

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 pers...

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 peopl...

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...

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...

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 F...

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 awa...

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.

Beth Johnston and Leigh Reynolds, the dynamic duo who are spearheading the FSH Society’s national chapter program . 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 to...

Join us for an interview with Curt Calder, co-founder of AnsonCalder, 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 we...

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 powerle...

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 or listen and ask questions on the air by calling (949) 27...

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 s...