FOP Web Links
Here are links to other websites with more information about FOP. Some are personal pages of people living with the disease, others are informational pages, and some are links to news coverage about the disorder.
General FOP information
- International FOP Website
- www.cfopn.org (Canadian FOP Network)
- Wikipedia page on FOP
- UCSF Children’s Hospital page on FOP
- What FOP Looks Like
- “We know what we’re fighting now.”
- AAOS page on FOP
- Nature Genetics article on FOP
- Muscular Dystrophy Campaign’s info on FOP
- Bones and Soft Tissues
- Finding the Magic Mountain: Life with Five Glorious Kids and a rogue gene called FOP
This is a complete book written by a mother of a FOP child. Good reading.
Personal FOP websites
- The Crooked Guy – Nick Mahler
- Tomasz Przybysz created an FOP website in Polish
- Ivan Garcia created a website about FOP in Spanish
- Akihiro Shino created a website in Japanese called “Touch Medusa!” which contains a diary and shows his life with FOP with lots of pictures in his website.
- Joshua Scoble - Bingo For A Cure
- Jud Bogard
This site also has several videos about FOP - Whitney Weldon
The Weldon FOP Research Fund - Jasmin Arial Floyd (another page here)
- Hayden Pheif
- www.shaneterryfop.com (website about Shane Terry)
News Stories
- The Girl Whose Muscles are Turning into Bone
The complete hour-length documentary on Luciana Wulkan (requires a download to view) - Vincent Whelan in medical school
- Shane Terry from Watertown, NY
- Human Mutants: FOP Skeleton Mutation
- Zach Armstrong from Australia
- Brooke Connell from Ontario Canada
- Student Makes Use of His Disease: Young Fresnan With a Rare Bone Disorder Will Spend a Week in a Prestigious Lab.
- The Girl Whose Muscles are Turning to Bone
- Gene discovery could be a skeleton key
- A Few Hundred People Turned to Bone
- Hope for Escape From a Prison of Bone
- Discovering FOP
- Researchers Discover Gene That Creates Second Skeleton
- A Devastating Diagnosis
- Trying to Free Young Muscles from Rare Bone Disorder
- Stone Person Disease Found
- Local women cope with bone disorder
- Shark Therapy for Bizarre Bone Disease
- Rare ‘Stone Man’ Gene that changes Muscle into Bone
- Penn researchers discover gene that creates second skeleton
- Capitol Hill reception focuses on FOP
- Rare Bone Disease Traces to Faulty FOP Gene
- Penn Medicine Press Kit and Media Briefing Links
- Boy’s Body Turning to Bone
- Medical Mysteries: Conditions and cases that have baffled doctors
- Living with a Rare Disease
- What’s Wrong with Henry?
A close look at Henry Eastlack’s skeleton - Cruel disease turns sufferers into statues
UCSF starting world’s 2nd center on rare disorder that causes crippling bone growth - Sarah Steele
International FOP Pages
