International FOP Association
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| Founded | 1988 |
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| Founder | Jeannie L. Peeper, BA |
| Focus | A Cure for FOP |
| Location |
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Area served
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World wide |
| Method | Fund research to find a cure for Fibrodysplasia Ossificans Progressiva while supporting, connecting, and advocating for individuals with FOP and their families, and raising awareness worldwide. |
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Key people
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Jeannie L. Peeper, BA, President Paul Brinkman, PhD, Board Chairperson Amy Gordon, Vice-Chairperson Karen Munro, LL.B., Secretary David M. Rocke, PhD, Treasurer |
| Website | www.ifopa.org |
The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a US-based 501(c)(3) non-profit organization supporting medical research, education and communication for those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva (FOP). 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, part of the Kansas City, Missouri metropolitan area.
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. Unaware of others with her condition, Peeper discovered that Dr. Michael Zasloff, then at the National Institutes of Health (NIH), was studying FOP. Zasloff 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 S. Kaplan, Michael Zasloff, and Eileen M. Shore.
Throughout the 1990s, IFOPA organized two international symposiums on FOP and several FOP family meetings. During this period the association grew both in terms of fund raising and membership nationally and internationally. 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, IFOPA celebrated the FOP Lab’s discovery of the FOP gene. By 2014, the organization had over 500 members from 57 countries and had partnered with FOP organizations and communities in Argentina, Australia, Brazil, Canada, France, Germany, India, Italy, Japan, Malaysia, The Netherlands, People's Republic of China, Poland, Russia, Serbia, South Africa, Spain, Sweden and the United Kingdom. See External Links at the bottom of this article for links to FOP associations in many of the foregoing countries.
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