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.

1988

• June 8, IFOPA incorporated as a 501c3 nonprofit organization with 11 members from the FOP community. Learn more about Jeannie Peeper and our other founders. 
• FOP Connection newsletter first published by Jeannie Peeper

1989

• IFOPA joined the National Organization of Rare Diseases (NORD)

1990

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

1991

• 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

1992

• IFOPA membership reaches 100

1993  

• FOP Family Meeting held in Nashville, Tennessee

1994

• 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)

1995

• 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

1996

• Milestones donor newsletter first published
• IFOPA Annual Fund Drive established
• IFOPA contributes $130,000 to the FOP Research Lab at the University of Pennsylvania

1997

• 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

1998     

• 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

1999

• 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”

2000

• 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

2001

• 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

2002

• Betty Anne Laue IFOPA Resource Center established
• Exceptional Parent Magazine Organizational Spotlight features IFOPA

2003

• 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

2004

• 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

2005

• 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

2006

• 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

2007

• 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

2008   

• 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

2009

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

2010

• 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

2011

• Scientific Workshop for a Cure: Strategies for the Treatment of FOP held in Philadelphia with 27 scientists from various institutions

2012

• 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  

2013

• 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

2014

• First FOP Drug Development Forum held in Boston, Massachusetts

2015

• IFOPA launches FOP Registry and ends the year with 84 participants  
• Three research grants awarded totaling $125,000 through the new ACT (Accelerating Cures and Treatments) for FOP Grant Program -- grants focused on the development of new therapies

2016

• First FOP Awareness Day Matching Gift Campaign held
• Second FOP Drug Development Forum held in Boston, Massachusetts
• IFOPA presents its Guidelines for Engagement with Pharmaceutical Companies at the Global Genes RARE Patient Summit
• Three research grants awarded totaling $108,000 through the ACT (Accelerating Cures and Treatments) for FOP Grant Program
• First regional FOP Family Gathering held in St. Louis, Missouri
• FOP Registry ends the year with 117 participants  

2017

• Redesigned website launched at ifopa.org
• FOP Registry translated into French, German, Italian, Portuguese and Spanish. FOP Registry ends the year with 161 participants
• IFOPA hires the organization's first full-time Director of Research Development & Partnerships and Family Services Manager
• Four research grants awarded totaling $247,500 through the ACT (Accelerating Cures and Treatments) for FOP Grant Program
• Third FOP Drug Development Forum hosted by IFOPA and FOP Italia in Sardinia, Italy
• Open-access FOP Mouse Model made available by the IFOPA
• FOP Family Gathering held in San Francisco, California
• FOP Registry ends the year with 161 participants  

2018

• Redesigned, mobile-friendly Patient Directory launched
• FOP Registry translated into Russian
• IFOPA joins the Penn Medicine Orphan Disease Center Million Dollar Bike Ride and funds two new FOP research grants totaling $75,000
• Four research grants awarded totaling $207,300 through the ACT (Accelerating Cures and Treatments) for FOP Grant Program
• FOP Family Gathering held in Baltimore, Maryland
• At the 2018 FOP Family Gathering, IFOPA launches the FOP Biobank
• FOP Registry ends the year with 225 participants  

2019

• Dr. Kaplan makes a transformational gift to The Harold & Elaine Kaplan Quality of L.I.F.E. Awards
• IFOPA hosts the FDA Rare Disease Listening Session on FOP 
• Updated FOP Treatment Guidelines released by the International Clinical Council on FOP
• Four research grants awarded totaling $280,000 through the ACT (Accelerating Cures and Treatments) for FOP Grant Program
• Two FOP research grants totaling $80,400 awarded through the Million Dollar Bike Ride Pilot Grant Program 
• FOP Family Gathering held in Orlando, Florida -- view the photo gallery or watch the 2019 FOP Family Gathering Wrap-up Video
• At the 2019 FOP Family Gathering, IFOPA launches the Resilient Living Program: Strengthening the Mind & Spirit to address the mental well-being of FOP families
• IFOPA participates in Thomas Jefferson University's WILL Project - We Improve Life and Living With FOP 
• FOP Registry ends the year with 271 participants   

2020

• First-ever research grant in gene therapy awarded to the University of Massachusetts with funds raised through In Pursuit of a Cure 
• Four research grants awarded totaling $244,000 through the ACT (Accelerating Cures and Treatments) for FOP Grant Program
• Two FOP research grants totaling $80,000 awarded through the Million Dollar Bike Ride Pilot Grant Program  
• IFOPA begins funding the FOP Preclinical Drug Testing Program at Mayo Clinic
• Dental Care Travel Stipend Program rolls out to support families traveling to receive dental care from FOP dental experts
• First-ever Virtual FOP Family Gathering held after COVID causes cancellation of in-person meeting
• Ability Toolbox Online Guidebook launched showcasing tips, tools and home modifications to maintain independence
• FOP-PROMPT, a PRO (patient-reported outcomes) questionnaire that captures the symptoms most important to people living with FOP, developed for use by researchers and clinical trial sponsors studying new treatments for FOP
• FOP Registry ends the year with 298 participants 

2021

• Year two of gene therapy research funded at the University of Massachusetts with funds raised through In Pursuit of a Cure
• $64,000 FOP research grant awarded through the Million Dollar Bike Ride Pilot Grant Program  
• The Advocacy Series: Develop Skills to Speak Up for Your Needs launched with podcasts, webinars, community panels and educational handouts
• IFOPA-led Prevalence Study is published establishing prevalence of FOP at one in a million
• Introduced Welcome Packets in 8 languages 
• IFOPA brings FOP national organizations together to host the first-ever Global FOP Awareness Day Campaign
• Virtual FOP Family Gathering held online 
• FOP Registry ends the year with 325 participants 

2022

• 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 

2023

• Organized community members to send letters to the FDA and give verbal testimony during the Open Public Hearing at the FDA Advisory Committee Meeting for palovarotene, the first potential treatment for FOP
• Introduced Dental Kits to help community members to stay on top of their oral hygiene
  
• Launched a private Facebook group for siblings of living and deceased individuals with FOP