page_title: International FOP Association
section_title: Founding and history
hierarchical_section_title: International FOP Association / Founding and history
caption_attribution_description: English: Jeannie L Peeper, personal photo
context_page_description: The International Fibrodysplasia Ossificans Progressiva Association is a US-based 501 non-profit organization supporting medical research, education and communication for those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva. IFOPA's mission is to fund research to find a cure for FOP while supporting, connecting, and advocating for individuals with FOP and their families, and raising awareness worldwide. IFOPA is governed by a volunteer board of directors which may range in number from 9 to 15, at least one of whom must have FOP. The association's location is 1520 Clay St., Suite H2, North Kansas City, MO, 64116, part of the Kansas City, Missouri metropolitan area.
context_section_description: IFOPA was founded in 1988 by Jeannie L. Peeper. Diagnosed with FOP in 1962 at age four, Peeper graduated from college in 1985 with a bachelor of arts degree in social work. Michael Zasloff, then at the National Institutes of Health (NIH), was studying FOP and put Peeper in contact with all FOP patients known to the NIH, eighteen in total, to whom Peeper mailed a questionnaire. Eleven responded. In early 1988, Peeper started a newsletter called FOP Connection in collaboration with Nancy Sando, one of the respondents. In June of that year, Peeper founded the IFOPA to facilitate fund raising for FOP research and generally create awareness of the disease. With an initial association membership of eleven, Peeper became the inaugural president and Sando was appointed vice president. In 1989, Peeper collaborated with the University of Pennsylvania to support establishment of the FOP Collaborative Research Project, and in 1992, the Center for Research in FOP and Related Disorders, efforts spearheaded by Drs. Frederick Kaplan, Michael Zasloff, and Eileen Shore.
  Throughout the 1990s, IFOPA organized two international symposiums on FOP and several FOP family meetings. In the first decade of the 2000s, two more international symposiums were hosted by IFOPA, and other FOP scientific and family meetings were held in Argentina, Brazil, Canada, France, Germany, Italy, The Netherlands, Sweden, and the UK.  In April 2006, the Center for Research in FOP discovered the FOP gene. By 2020, the organization had over 500 members from 57 countries and had partnered with FOP organizations and communities on all continents except Antarctica.
  In 2010, IFOPA implemented the first annual Jeannie L Peeper Awards to recognize philanthropy, community involvement, international leadership and youth leadership in support of the FOP cause. Also in 2010, the Central Florida Chapter of the Association of Fund Raising Professionals named Peeper as winner of the 2010 Lifetime Achievement Award for her work in founding and establishing the IFOPA. A gathering of FOP families, supporters, researchers, and pharmaceutical industry representatives was held in Orlando in late 2013 on the 25th anniversary of the Association.
  IFOPA hosted FOP drug development forums in 2014 and 2016 in Boston, 2017 in Sardinia Italy, and 2019 in Orlando. The forums brought together FOP experts to discuss the latest research, solve drug development challenges and strengthen the global network of research collaborations. The 2019 Drug Development Forum attracted 154 attendees from 19 countries including researchers, clinicians, biotech and pharmaceutical company representatives, regulators, advocates and people living with FOP.  
  Quoting the 27th Annual Report of the FOP Collaborative Research Project "As of January 1, 2018, there were 37 research universities and/or clinical centers actively engaged in FOP research; 18 in the United States & Canada, 12 in Europe, five in Asia, one in Africa and one in Australia. As of January 1, 2018, there were 12 pharmaceutical and biotechnology companies actively developing drugs for FOP based on a multitude of hard targets, and over 30 companies that have expressed interest."
  In early 2017, IFOPA closed its Orlando office and moved administrative operations to North Kansas City, Missouri.  A reorganization plan entailed creation of several new positions as follows: Director of Research Development and Partnerships, Family Services Manager, Donor Relations and Administrative Coordinator, Community Fundraising Manager, and FOP Registry Project Director.
caption: Jeannie L Peeper 
  IFOPA Founder and President
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