Video Library
FOP has featured in a number of documentaries, awareness videos, television shows and news segments over the years.
A big thank you to everyone who shares their story, helping to raise awareness and understanding of FOP.
If you know of any video about FOP that is not listed here, please do let us know so we can add it to our library.
Click on any of the images to launch the videos. The link will take you to an external website, usually YouTube. These links have been created in good faith, however FOP Friends cannot be held responsible for external content. If you should find a broken link or have concerns about the content of any of the videos, please get in touch. Many thanks.
Let Their Feet Lead the Way: Tools for Early Identification of FOP
November 2020
This PeerVoice panel discussion on fibrodysplasia ossificans progressiva, or FOP, is led by Professor Richard Keen and Dr Angela Cheung (University of Toronto) and Chris Bedford-Gay as a patient/parent representative.
The discussion was supported by an educational grant from Ipsen. The intended audience is the medical community to improve the diagnosis rate for people with FOP and to reduce the likelihood of misdiagnosis and the resulting inverventions. Resources are available on their website.
In Pursuit of a Cure: AJ’s Story
August 2020
Meet Aj who lives with FOP. He talks about his hobbies and his FOP, and why a cure for FOP is so important to him and how In Pursuit of a Cure could make a huge difference to his life
In Pursuit of a Cure: Sienna’s Story
August 2020
Listen to Sienna talk about living with FOP, and meet her family, who talk about why In Pursuit of a Cure is so important for their daughter and everyone else affected by FOP.
In Pursuit of a Cure: An Introduction to Gene Therapy
August 2020
In case you missed the webinar, here is a recording which gives an introduction to gene therapy; one of the new ways researchers are approaching the quest to find a treatment and a cure for FOP.
The Balancing Act
August 2020
Professor Richard Keen (RNOH) and Nancy Sando, Michigan USA, talk about FOP and the challenges living with FOP creates. The segment is sponsored by Keros Pharmaceuticals who are researching into a treatment for FOP.
STOPFOP: Webinar Update
July 2020
The webinar from the STOPFOP team, explaining about the trial, in preparation for its reopening after the delay due to Covid-19 pandemic.
ECHO: Fibrodysplasia Ossificans Progressiva by Edward Hsaio, MD, PhD.
June 2020
Tutorial on Fibrodysplasia Ossificans Progressiva by Edward Hsiao MD, PhD Associate Professor of Medicine at University of California San Francisco (UCSF) Health
A Message from our Friends
May 2020
A message from some of our doctors, researchers, families, and supporters, in celebration of our community. We were not able to meet in person for our biennial Conference and Family Gathering in May 2020 due to the Coronovirus pandemic.
For a Chance – Nadine
April 2020
Nadine, who is living with FOP, shares her story. Most interesting, is how she has excelled as a scientist and is now a researcher, looking into effective treatments for FOP.
‘Dual Deprivation’ by Sandy Ayoub, Student Voice 2019 Runner Up, St. George’s, University of London
February 2020
Listen to Sandy Ayoub, a final year medical student, talk about her experience of rare disease teaching at medical school and how she learned about FOP. Sandy took part in The Student Voice Eassy prize last year, and was runner up with her essay entitled Dual Deprivation. She looked into the impact of living with a rare disease on a patient’s mental wellbeing, and also the toll it took on the wellbeing of the patient’s carer. Sandy worked with a family who were living with FOP, as well as FOP Friends. Her essay was judged runner up in the competition.
Read Sandy’s essay here: Dual Deprivation: understanding the psychological burden
For more information on the Find a Cure organisation, visit: https://www.findacure.org.uk
For more information on the competition, visit: https://www.findacure.org.uk/student-voice-prize/
Born Different: The Human Statue who’s Turning to Bone
January 2020
Ashley Kurpriel shares her story and journey with FOP. She tells a remarkable tale of how she doesn’t let anything stand in her way.
FOP and Me: Oliver’s Story
December 2019
Listen to Oliver, at just 10 3/4, tell his own story of his journey with FOP and how he lives his life.
Her Name was Carol Orzel
December 2019
In February 2019, the Mütter Museum welcomed the skeleton of Carol Orzel to their permanent exhibitions. Carol’s last wish was to have her skeleton displayed in the Mutter Museum, next to her ‘friend’ Harry Eastlack. Her one request: to have her jewellry and make-up displayed alongside her!
Learn more about Carol: http://muttermuseum.org/news/new-exhi…
The Same but Different
November 2019
Produced by the IFOPA, this is a short animated video which explains FOP to children. It tells the message of how we are all the same, but different. It is ideal to share with schools, friends, or other groups of young people, to introduce FOP.
Fibrodysplasia Ossificans Progressica: Mechanism of Disease
August 2019
Produced by the pharmaceutical company, Clementia (which was subsequently acquired by Ipsen), an explanatory video about FOP.
Living Differently
April 2019
BBC3: Carli has a disease that is ‘turning her into stone.’ The incredibly rare condition known as Fibrodysplasia ossificans progressiva (FOP) has caused Carli’s muscles, tendons and ligaments to turn to bone, fusing her into a ‘frozen’ position. Carli’s hip has locked, forcing her to stand on one leg. This intimate film shows how Carli battles with intense pain on a daily basis and has already lost significant mobility throughout her body. Despite slowly turning into a human statue, Carli is refusing to let the condition stop her from moving in with her boyfriend and living life to the full whilst she can.
Trailer for the Tin Soldiers Documentary
November 2018
“Robbed of movement as children, but not their courage, their love, their hope …
Tin Soldiers is a film in the making that shines a light on the victims of a debilitating disease, the hunt to find a cure, and the search for those still locked in darkness.”
Tin Soldiers is an independent documentary film that embarks on an unprecedented search for the unidentified victims, as it gives voice to FOP warriors in the telling of their stories ‒ shining a light on a little-known condition in some of the world’s most under-served communities. The Tin Soldiers project is the brainchild of Amanda Cali and Odette Schwegler. Learn more about their inspiration and the project here: Tin Soldiers FOP Outreach Program
FOP Awareness Video: Joshua Scoble’s Story
2018
Listen to Joshua’s parents, Stacey and David Scoble, talk about their son’s diagnosis and their family’s journey. Professor Kaplan also explains FOP.
FOP Friends Conference and Family Gathering 2016
May 2016
The official video from the UK’s 2nd biennial Conference and Family Gathering in Manchester, England. Listen to the world’s specialists on FOP talk about the significance of the event for patients and families. See the families themeselves, meeting with others and building relationships that will offer them the support and friendship they will need as they continue with their journey with FOP.
Inside Edition: How These People Found Love
May 2016
Inside Edition meets two people, living with FOP, who tell the story of how they found love. They share footage of their weddings and talk about how they adapt devices to allow them to maintain as much independence as possible.
University of California, San Francisco Genetic Mysteries: FOP – When Bodies Turn to BoneWhat is FOP?
December 2013
Part of the “UCSF Osher Center for Integrative Medicine presents Mini Medical School for the Public” series.
Dr. Joseph A. Kitterman, UCSF Professor Emeritus of Pediatrics, explores FOP.
DOCS: The Girl whose Muscles are Turning to Bone
April 2005
Read Luciana’s story about growing up with FOP.