General Articles and Recent News

Here are some of the more recent FOP-related news stories and noteworthy events from around the globe.

Articles on the Web

Attention Focused on FOP
We are grateful that FOP has received a lot of attention in the media. It allows us the opportunity to educate people about FOP. Media attention provides us the avenue to find other FOP families, prevent misdiagnosis and raise FOP awareness. It gives us hope that FOP research will lead us to a treatment and one day a cure.

Listed below are links to articles that appear on the World Wide Web.

2007

16-Month-Old Boy Youngest to Have Rare Disease
Joscelyn Moes of WFMZ' in Allentown, PA tells the story of 16-month old Joshua Scoble, the youngest person ever to have been diagnosed with FOP. Watch the video: Segment One | Segment Two

How Fibrodysplasia Ossificans Progressiva (FOP) Works
Katie Lambert, writer/editor for the educational web site Howstuffworks.com, has written this article with the help of Dr. Frederick Kaplan.

Grey's Anatomy Features TV's First Fiction Character with FOP
The hit show's March 22 program, titled "My Favorite Mistake," featured a character named Cathy Rogerson, who has FOP.
(PDF - requires free browser plug-in to view -- see below)

Disease benched for a little playing time
Kyle Bonzelaar of Jenison, MI plays for the Jenison freshmen basketball team despite having FOP.
(PDF - requires free browser plug-in to view -- see below)

Jake's knocked out by The Hitman
The Blackpool Gazette shares the story of Jake Flete, 13, a Lancashire schoolboy with FOP who meets his boxing hero, the Manchester-based powerhouse, Ricky Hatton.

2006

Penn Researchers Discover FOP Gene
Pinpointing the cause of Fibrodysplasia Ossificans Progressiva (FOP) will accelerate development of treatments for FOP and common bone disorders.

Tackle FOP
The New York Giants join the IFOPA to help raise FOP awareness and find a treatment and a cure.

Finding Magic Mountain
In the book Finding Magic Mountain: Life with Five Glorious Kids and a Rogue Gene Called FOP, author and IFOPA member Carol Zapata-Whelan weaves through her family's past as she chronicles her son's senior year in high school, during which he readies for his future as a pre-med student at an elite university.

Trapped in her bones
Melissa Leong of Canada's National Post profiles Brianne LaChance and the rare disease that leaves sufferers imprisoned in a 'second skeleton.'

2005

FOP Makes Washington Plea
IFOPA organizers and members held a "Friendraiser" reception (as opposed to a fundraiser) with national politicians in Washington, DC as a means to increase FOP awareness and research funds.

A 'devastating' diagnosis
Suzanne Leigh wrote this story for USA TODAY about Vincent and Carol Whelan, as well as the work being done by Dr. Fred Kaplan at the University of Pennsylvania and Dr. Joseph A. Kitterman at California State Univeristy-Fresno.

FOP Center in California
"UCSF starting world's 2nd center on rare disorder that causes crippling bone growth" was published in the San Francisco Chronicle was written by Patricia Yollin. This article discusses the new FOP center in California.

2001

Adopting Orphan Diseases
Red Herring magazine featured "Adopting Orphan Diseases" by Thomas Maeder, writer of the Atlantic Monthly article on FOP, in their January 16, 2001 issue. (Note: You must register with the site to read the article. Registration is free.)

Local Women Cope with Bone Disorder
The Pittsburgh Post-Gazette featured this article on January 9, 2001.

2000

Placido and Friends Sing for a Cure
The AP Newswire featured this story about a benefit concert held on February 2, 2000.

The Girl with Two Skeletons
This article was featured in the British News.

1999

Girl's Body Turning to Bone
Article which appeared in the Eagle-Tribune (New Hampshire) on August 1, 1999.

Skeleton Key
On March 25, 1999, the BBC aired "Skeleton Key," an hour-long documentary about FOP on Horizon. The Skeleton Key video is available through The Betty Anne Laue/IFOPA Resource Center.

* To receive a copy of any of the below articles, please contact us. We would be happy to supply you with them.

Magazine Articles (Recent)

2007

Family Circle - "Community Service" story focuses on fundraisng efforts of Jennifer Snow (October 16, 2007)

2006

Newsweek - "15 People Who Make America Great: The Genius" feature focuses one part on Dr. Frederick Kaplan (July 3 - July 10, 2006)

2003

Do It News - "Sarah Goes To College" by Marilyn Hair (2003)

Der Spiegel - "The Living Statues" interviews with Dr. Kaplan, Jeannie Peeper, Connie Green, Roger ZumFelde and Mattias Sommer (2003) This article is available in German and English

2002

Exceptional Parent - "IFOPA: International Fibrodysplasia Ossificans Progressiva Association" by Marilyn Hair (2002)

2000

Theology Today - "Unremitting Compassion: The Moral Psychology of Parenting Children with Genetic Disorders," by FOP father Richard Steele. (July 2000)

Magazine Articles (Archive)

1999

Journal of Religion, Disability and Health - "Bridging the Challenges, the Effects of FOP on the Family," by FOP mother Marilyn Hair: An edited, updated version of a presentation given at the 1995 symposium. (Vol. 3 1999)

Newsweek - "My Son's Fight With a Mysterious Disease" story details Carol Zapata-Whelan's experiences upon learning her son Vincent has FOP. (July 12, 1999)

1998

Ladies Home Journal - "Turning to Stone" by Cynthia Hanson: an article intimately portraying Andy and Nancy Sando. (Sept. 1998)

The Atlantic Monthly - "A Few Hundred People Turned to Bone" by Tom Maeder: a superb article chronicling the story of FOP research and profiling Andy and Nancy Sando. (Feb. 1998)

1997

Penn Med Magazine - "Bound by Bone" by Corey Ullman: an illustrated article about FOP and the IFOPA which won top prize for excellence in feature writing by the Association of American Medical Colleges. (1997)

Exceptional Parent, "Give Us a Lift" by FOP mother Marilyn Hair; an article about a church's efforts to raise money for a wheelchair lift so that her daughter Sarah could participate in church activities. (1997)

1996

Science, "Protein Builds Second Skeleton" by Wade Roush a very understandable, one page report describing FOP research up to the discovery of the lymphocyte/BMP4 )Aug. 1996)

1994

Journal of Religion in Disability and Rehabilitation - " Accessibility or Hospitality" by FOP parent Richard Steele: An article discussing various responses to disabilities. (1994)