You can now listen to our GivingTuesday Telethon interviews from our December 3rd event. Streamed over Facebook Live, our Telethon host Tim Hollenback interviewed dozens of leaders in our community—activists, celebrities, scientists, doctors, people doing awesome things—to raise worldwide awareness of FSHD. Their stories were utterly compelling, and the sense of optimism for a treatment in the near future was palpable. Enjoy!
Click below to hear Session 1 interviews with:
- Mark Stone FSHD Society President and CEO
- June Kinoshita FSHD Society Chief Strategic Programs Officer
- Lou Kunkel Renowned Harvard scientist who discovered the Duchenne muscular dystrophy gene. He also works on FSHD and serves on the FSHD Society scientific advisory board
- Alan Brown Director of business development for NFL Films. Artist, traveler, sports fan
- Jen Egert, PhD Psychologist and mindfulness coach, has many family members with FSHD
- Chris Carrino Announcer for Brooklyn Nets and founder of the Chris Carrino Foundation for FSH
- Kiley Higgs Kansas City Chapter Director, FSHD Clinical Trial Research Network Project Manager at University of Kansas Medical Center
- Dave Lukas Chicago chapter director; Walk & Roll leader; Research volunteer
- Beth Johnston FSHD Society Chief Community Development Officer
Click below for Session 2 interviews with:
- Scott Harper, PhD Scientist at Nationwide Children’s Hospital, leader in gene therapy for FSHD
- Fran Sverdrup, PhD FSHD researcher at Univ. St. Louis and father of a daughter with FSHD
- Alexandrea Comstock Co-founded Faces of FSHD on Facebook. Her family has three affected generations (her mother and young daughter also have FSHD). See the recent FSHD Advocate for our story about her.
- Amy Bekier FSHD Society Board and San Diego chapter director. Amy started the first Walk & Roll about decade ago. She is a talented artist and was an avid golfer.
- Ryan Levinson Expedition Sailor / Professional Ocean Sports Athlete, Ryan sailed to French Polynesia 4 years ago and lives there on a boat with his wife. Livin’ the dream!
- Russell Caratenuto III Diagnosed in high school, that didn’t stop his volleyball team from winning the state championship. Now researching FSHD and pursuing a medical career treating FSHD
- Angela Lek, PhD Hunting for treatments at Yale University, Dr. Lek training in Lou Kunkel’s lab.
- Taylor Quigg Patient-advocate, entrepreneur, mom.
Click below for Session 3 interviews with:
- Curtis & Allison Calder After his diagnosis, he quit his job in finance and founded AnsonCalder, a fine leather accessory brand. Allison is in the family business and serves as Utah chapter director.
- George Pollock Jr 2019 Race Across America captain, FSHD Society board member.
- Alec DeSimone, PhD Researcher from The University of Massachusetts Medical School working on discovering treatments for FSHD.
- Steven Blier Pianist, teacher, writer. He teaches at Juilliard and works with many renowned singers.
- Kristin Zwickau New England chapter director, mother of Katelyn (diagnosed at age 4)
- Carden Wyckoff FSHD Society’s youngest board member. She traveled around the world with her wheelchair and traversed the Appalachian trail riding piggyback with her brother.
- Heloise Hoffmann Our youngest chapter director, from Naples, Florida. She’s still in high school. She’s a talented singer-songwriter. We hope she’ll share a song with us.
- Jamshid Arjomand, PhD FSHD Society chief science officer
- Lexi Pappas Filmmaker, FSHD advocate from New England. Lexi gave powerful testimony before the FDA this spring.
Click below for Session 4 interviews with:
- Max Adler Hollywood actor and producer, best known for his groundbreaking roles in Glee and Switched at Birth, he also has appeared in numerous films and TV shows. His next role is in Trial of the Chicago 7, written and directed by Aaron Sorkin.
- Jim Albert FSHD patient and advocate, Jim is a member of the Clinical Trial Research Network patient engagement council. He is a strong advocate for patient participation in research.
- David Younger, PhD Psychologist whose own FSHD journey has guided his practice.
- Jenny Hasenjaeger Singer-songwriter
- Goran Kralj Musician, singer of The Gufs, a popular Milwaukee band.
- Mark Stone FSHD Society President & CEO
- June Kinoshita FSHD Society Chief Strategic Programs Officer
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