History of IFOPA

Following the journey of the IFOPA

Read this special memoir of the IFOPA's founding, "My Journey," by Founder and President Emeritus Jeannie Peeper.

Learn about Jeannie Peeper's FOP Story.




  • 1st Annual Jud Bogard Golf Tournament raises $30,000 to fund the 1991 FOP Symposium


  • 1st FOP Family Meeting held at Disney World with 9 FOP families
  • 1st International FOP Symposium held at University of Pennsylvania with 28 physicians and scientists and 21 FOP families


  • IFOPA membership reaches 100


  • FOP Family Meeting held in Nashville, Tennessee


  • FOP Family Meeting at Disney World
  • 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 at the University of Pennsylvania
  • “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 at the University of Pennsylvania


  • 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 at the University of Pennsylvania
  • IFOPA membership reaches 173


  • 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”


  • 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


  • 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


  • 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 L.I.F.E. Awards program established
  • Traveling Resource Center established


  • IFOPA membership reaches 363 persons with FOP in 50 countries. Growth attributed to Internet
  • IFOPA contributes $600,000 to the FOP Lab at the University of Pennsylvania
  • 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 the IFOPA and Planning the Future Board Meeting is held in Orlando where Linda Daugherty is named Executive Director and Amanda Cali is named Chair of the Board
  • IFOPA has 4 staff members
  • IFOPA hosts “Friendraiser” on Capitol Hill, spreading FOP awareness to legislators
  • Discovery Health Medical Incredible episode about FOP


  • IFOPA signs intellectual property agreement with University of Pennsylvania
  • 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


  • 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


  • IFOPA Teen & Young Adult meeting, San Diego, CA, USA


  • Jeannie Peeper Awards established
  • FOP Connection newsletter distributed by email
  • IFOPA Wikipedia article online
  • IFOPA distributes the Medical Binder system to all members
  • 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


  • 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
  • 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  


  • 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
  • IFOPA hosts 25th Anniversary Celebration & FOP Family Gathering where FOP Drug Development Tools were launched


  • First FOP Drug Development Forum held in Boston, Massachusetts









  • Year three of gene therapy research funded at the University of Massachusetts and the STOPFOP Clinical Trial Principal Investigator with funds raised through In Pursuit of a Cure
  • Fifth FOP Drug Development Forum held in Dallas, Texas with the Traumatic HO & FOP Pre-Conference Symposium hosted by the Univesity of Texas Southwestern 
  • Introduced Ability Toolbox Toolkits for Health Care Professionals
  • Enhanced Glossary launched on ifopa.org to provide information on FOP biology, research and clinical studies and trials
  • New Frequently Asked Questions page added to ifopa.org
  • Virtual FOP Family Gathering held online 
  • IFOPA translates the FOP Registry into Korean and Polish
  • FOP Registry ends the year with 344 participants 


Make a Difference

Donate Connect Fundraise
Already a Member? Sign In

Sign Up for FOP Connection, Our Monthly eNewsletter