#GivingTuesday is a global day of giving fueled by the power of social media and collaboration. This year, it falls on December 3, and we are marking the day by holding our first GivingTuesday Telethon. Streamed over Facebook Live, our Telethon host will interview leaders in our community—activists, celebrities, scientists, doctors, people doing awesome things—to raise worldwide awareness of FSHD. See our interview schedule below.
How can you help? Join us on our Facebook page to watch, discuss, donate, and invite friends to listening parties. Share the Telethon with your social media network and ask everyone you know to support our campaign. People support people they know. You will be amazed by the multiplier effect of sharing. And best of all, a group of generous benefactors has pledged to match up to $100,000 of GivingTuesday donations. So every dollar you or your friends donate will be doubled!
We all rely on support from generous donors to continue propelling us toward the cure for FSHD. Please donate this #GivingTuesday to ensure that a treatment will be in the hands of our families by 2025!
Anson Calder Wallet to be given to the biggest donor!
Anson Calder crafts innovative, contemporary leather goods for your everyday essentials. Made from full-grain calfskin from a French tannery that traces its origins to the 16th century, our innovative designs combine sleek storage with enduring quality.
For more about Anson Calder’s unique history, tune in to the third session of our telethon and visit From Investment Strategist to Fashion Designer: Curtis Calder’s Unlikely Leap from Banking to Luxury Accessories.
#GivingTuesday Telethon Schedule
Telethon guests will be interviewed by our host, Tim Hollenbeck, in four sessions with breaks in between. (order subject to last minute changes):
SESSION 1 :: 8-11AM ET, 7-10AM CT, 5-8AM PT
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
SESSION 2 :: 12-3PM ET, 11AM-2PM CT, 9AM-12PM PT
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.
SESSION 3 :: 5-8PM ET, 4-7PM CT, 2-5PM PT
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.
|SESSION 4 :: 9PM-midnight ET, 8-11PM CT, 6-9PM PT|
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