History of IFOPA

Following the journey of the IFOPA



  • IFOPA joined the National Organization of Rare Diseases (NORD)
  • FOP Collaborative Research Project established at the University of Pennsylvania School of Medicine by Drs. Frederick Kaplan and Michael Zasloff


  • 1st Annual Jud Bogard Golf Tournament raises $30,000 to fund the 1991 FOP Symposium
  • 1st FOP Natural History Study conducted by Drs. Kaplan and Zasloff


  • 1st FOP Family Meeting held at Disney World with 8 FOP families
  • 1st International FOP Symposium held at University of Pennsylvania with 28 physicians and scientists and 21 FOP families
  • Dr. Eileen Shore joins the University of Pennsylvania FOP research group


  • IFOPA membership reaches 100
  • FOP Molecular Biology Laboratory established at the University of Pennsylvania


  • FOP Family Meeting held in Nashville, Tennessee
  • Natural History of Heterotopic Ossification in Patients with FOP, A Study of 44 Patients published by Drs. Kaplan and Zasloff


  • FOP Family Meeting at Disney World
  • Dr. Kaplan awarded Johnson & Johnson Orthopaedics Research Grant for “Molecular Pathogenesis of Heterotopic Ossifications in FOP and in a Transgenic Animal Model”
  • National Institutes of Health (NIH) Research Grant provides $200,000 annually for 3 years for FOP research.
  • 1st Annual Find-A-Cure Dinner & Auction, Santa Maria CA , by Snow Family, the longest running IFOPA fundraiser (16 years)


  • IFOPA contributes $25,000 to the FOP Research Lab
  • “What is FOP? A Guidebook for Families” and “What is FOP? Questions and Answers for the Children” published
  • 2nd International FOP Symposium held in Philadelphia with 75 physicians and scientists and 42 FOP families
  • John and Amanda Cali establish the Ian L Cali FOP Research Fund at the University of Pennsylvania


  • Milestones - Donor newsletter first published
  • IFOPA Annual Fund Drive established
  • IFOPA contributes $130,000 to the FOP Research Lab


  • FOP website created by Sharon Kantanie
  • FOP Family Meeting at Disney World with 37 FOP families
  • Instructions for collecting tissue samples distributed to FOP community
  • IFOPA contributes $300,000 to the FOP Research Lab
  • IFOPA membership reaches 173
  • Dr. Kaplan awarded the Isaac and Rose Nassau Professorship of Orthopaedic Molecular Medicine at the University of Pennsylvania School of Medicine, established by Diane Weiss in memory of her parents  
  • NIH Research Grant renewed for 4 years
  • FOP Research Lab collaborates with scientists from University of California-Berkeley, Oxford University and Association Francaise Contre Les Myopathies.
  • 1st FOP Family Meeting in Germany


  • Patient Emergency Cards produced and distributed to FOP community
  • IFOPA hires first 2 staff members
  • IFOPA distributes and publishes FOP Flare-Up Survey
  • A Few Hundred People Turned to Bone, by Thomas Maeder published by The Atlantic Monthly
  • IFOPA Patient Needs Life Award Project begins


  • IFOPA Distinguished Research Associate Scientist Award  given to FOP research scientist Meiqi Xu
  • BBC’s Horizon aired “Skeleton Key” documentary on the history of FOP research  
  • ABC’s 20/20 aired feature story about FOP, “The Bone People”
  • FOP-e.v. (Germany) holds their first meeting


  • 3rd International FOP Symposium held in Philadelphia, with 150 physicians and scientists, 84 FOP families, and 9 POH families
  • “In Search of a Cure” 20 min FOP informational video
  • Human Genome Project completed


  • IFOPA membership reaches 262
  • IFOPA first rents office space
  • Flu Survey conducted by FOP Research Lab & IFOPA
  • IFOPA website adds content in Spanish, German, French and Portuguese
  • FOP Treatment Guidelines published


  • Betty Anne Laue IFOPA Resource Center established
  • Exceptional Parent Magazine Organizational Spotlight features IFOPA
  • 1st FOP Family Meeting in United Kingdom
  • Phase I Clinical Trial for safety & efficacy of Squalamine, sponsored by Magainin Pharmaceuticals. Protocol was complex and no patients enrolled
  • Dr David Glaser joins the University of Pennsylvania FOP Research Group


  • FOP Family Gathering at Disney World
  • US Bone & Joint Decade established, IFOPA represented
  • IFOPA’s Multigenerational FOP Families International Search to find the FOP gene funded by the Weldon Family
  • Quality of LIFE Awards program established
  • Traveling Resource Center established
  • 1st Latin American FOP meeting in Brazil


  • IFOPA membership reaches 363 persons with FOP in 50 countries. Growth attributed to Internet
  • IFOPA contributes $600,000 to the FOP Lab
  • South American FOP meeting, “Latin American Experience” hosted by Dr. Patricia Delai
  • 1st Scandinavian FOP meeting held in Sweden
  • FOP Mothers Retreats in Colorado and New Jersey, hosted by Amanda Cali and Hillary Weldon
  • Whitney Weldon FOP Research Fund at University of Pennsylvania established by Bill and Hillary Weldon


  • Jeannie Peeper retires from daily responsibility at IFOPA. Planning the Future Board Meeting in Orlando. Linda Daugherty is named Executive Director, Amanda Cali named Chair of the Board
  • IFOPA has 4 staff members
  • IFOPA hosts “Friendraiser” on Capitol Hill, spreading FOP awareness to legislators
  • South American FOP Symposium, San Paulo, Brazil
  • Discovery Health Medical Incredible episode about FOP


  • IFOPA signs intellectual property agreement with University of Pennsylvania
  • FOP gene mutation identified by the FOP Research Lab at University of Pennsylvania. A recurrent mutation in the BMP type I receptor ACVR1 causes inherited and sporadic FOP published in Nature Genetics
  • Articles about the FOP gene discovery in The New York Times, Philadelphia Inquirer, LA Times, Daily Record-Scotland, Sydney Morning Herald and The Times-London. Television coverage on CNN’s Paula Zahn Now and ABC News Inside Edition
  • Primetime Medical Mysteries segment about FOP, “When the Body Turns to Bone”
  • A video about FOP is shown at a NY Giants football game at Meadowlands Sports Arena
  • Dr. Kaplan is 1 of 15 winners of Newsweek Magazine’s Giving Back Award
  • Finding Magic Mountain by Carol Whelan, the story of Vincent Whelan and FOP, is published
  • FOP Italia established, sponsors 1st FOP Family Meeting


  • 4th International FOP Symposium, held in Orlando, with 80 FOP families from 23 countries including a group of clinicians, researchers and scientists
  • International Presidents’ Council (IPC) founded. 1st IPC meeting held at 4th International FOP Symposium
  • FOP Patient Manual for Tools & Gadgets published
  • FOP Research goals: Understand how FOP gene mutations change the function of the ACVR1 protein; Develop animal models with the FOP mutation; Test potential treatments


  • FOP Facts & Insights Video Series created by Lori Henrotay
  • National Geographic Investigates: Medical Mysteries published with a chapter about FOP.
  • FOP Mothers Retreat in Colorado
  • FOP Research Symposium held in Sweden


  • IFOPA Teen & Young Adult meeting, San Diego, CA, USA
  • Canadian FOP Network sponsors 1st Canadian FOP Family Meeting
  • Dr. Robert Pignolo joins the University of Pennsylvania FOP Research group
  • Dr. Kaplan elected to the Institute of Medicine
  • Both Canada and the Netherlands sponsor 1st FOP Family Meetings


  • Jeannie Peeper Awards established
  • FOP Connection newsletter distributed by email
  • IFOPA Wikipedia article online
  • IFOPA distributes the Medical Binder system to all members
  • Survey of neurological symptoms in FOP conducted by Dr. Joseph Kitterman
  • Jeannie Peeper is awarded the Lifetime Leadership award from the Central Florida Chapter of Association of Fundraising Professionals


  • Scientific Workshop for a Cure: Strategies for the Treatment of FOP held in Philadelphia with 27 scientists from various institutions
  • 2nd Latin American FOP meeting held in Argentina
  • FOP Meeting in Italy, Rome
  • Dutch FOP Symposium
  • German FOP Meeting in Valbert Meinerzager


  • International President’s Council increases to 17 members
  • IFOPA has contributed a total $8.4 million to support the Center for Research in FOP & Related Disorders at the University of Pennsylvania School of Medicine
  • FOP accepted into NIH Rare Disease Registry
  • IFOPA Research Committee created to assist research efforts worldwide
  • IFOPA Italian Conference
  • Netherlands FOP Symposium
  • University of Pennsylvania FOP Natural History Survey conducted to understand the natural progression of FOP
  • Neurological Symptoms in Individuals with FOP by Dr. Joseph Kitterman and others published in the Journal of Neurology
  • Dr. Eileen Shore awarded the Cali & Weldon FOP Research Professorship at the department of orthopedic surgery at the University of Pennsylvania School of Medicine, established by John and Amanda Cali and Bill and Hillary Weldon in honor of their children Ian Cali and Whitney Weldon  
  • South Africa holds its first FOP Family Meeting


  • 25th anniversary of the IFOPA. Learn more about the celebration. 
  • The Mystery of the Second Skeleton, by Carl Zimmer published by The Atlantic Monthly
  • The Promise In Unraveling The Mysteries Of Rare Diseases, National Public Radio, Talk of the Nation hosted by Neal Conan
  • FOP Research is international with 25 venues that study FOP. Primary work is located at the University of Pennsylvania Center for Research & Related Disorders in FOP.
  • FOP Italia meeting brings leaders in the FOP community together
  • Canadian FOP Network hosts 2013 conference
  • IFOPA hosts 25th Anniversary Celebration & FOP Family Gathering where FOP Drug Development Tools were launched


  • IFOPA hosted first Drug Development Forum for FOP in 2014.
  • Phase 2 clinical trial of palovarotene an experimental RAR-gamma agonist, was launched in adults with FOP by Clementia Pharmaceuticals Inc.
  • UK FOP Conference
  • 1st Russian FOP Conference


  • IFOPA launches FOP Registry
  • Clementia Pharmaceuticals Inc., Phase 2 clinical trial of palovarotene in adults is completed and enrollment of children ages 6 to 14 years begins
  • Sweden FOP Meeting



Make a Difference

Donate Connect Fundraise

Already a Member? Sign In

Sign Up for FOP Connection, Our Monthly eNewsletter