The Disease That Grows Extra Bones (Carol Orzel Birthday Video)

April 20, 2021 would have been Carol Orzel’s 62nd birthday!

Carol was diagnosed with Fibrodysplasia ossificans progressiva (FOP) as a child and spent her life advocating for more research in search of a cure for this rare disease. When Carol passed away in 2018, she donated her skeleton to the Mütter Museum so that she could continue to educate the world about FOP. We spoke to Carol’s doctor and FOP experts to honor her memory and learn more about FOP.

April 23 is also FOP Awareness Day, which celebrates the day that the FOP gene, ACVR1, was discovered. 2021 marks the 15th anniversary of the announcement of the gene discovery!

Learn more about FOP Awareness Day: https://www.ifopa.org/fop_awareness_day

To support families living with FOP and FOP research: ifopa.org/awareness_day_shirts

To support more videos like this, become a monthly donor! Visit http://muttr.org/monthly and select “monthly.”

SPEAKERS:

Mona Al Mukaddam, MD, MS, FCPP
Director, Penn Bone Center Assistant; Professor of Clinical Medicine; Assistant Professor of Orthopaedic Surgery, University of Pennsylvania

Frederick S. Kaplan, MD, FCPP
Isaac & Rose Nassau Professor of Orthopaedic Molecular Medicine in Orthopaedic Surgery, University of Pennsylvania

Eileen M. Shore, PhD
Cali and Weldon Research Professor in FOP Research; McKay Orthopaedic Research Laboratory, University of Pennsylvania

Video by Jonah Stern

MUSIC:

"Bittersweet Waltz" by Sir Cubworth

"I Am a Man Who Will Fight for Your Honor" by Chris Zabriskie is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/
Source: http://chriszabriskie.com/honor/
Artist: http://chriszabriskie.com/

"Spanish Rose" by Chris Haugen

"Touching Moment" by Wayne Jones

"Dinner for Two" by SYBS

"Arms of Heaven" by Aakash Gandhi

"Beneath the Moonlight" by Aaron Kenny

"Castleshire" by Chris Haugen

"Funeral March" by Chopin

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Видео The Disease That Grows Extra Bones (Carol Orzel Birthday Video) канала Mütter Museum of the College of Physicians of Philadelphia