Founded 1988 Focus A Cure for FOP | Founder Jeannie L. Peeper, BA Area served World wide | |
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Location North Kansas City, MO, USA 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. | ||
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.
Contents
Founding and history
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.
In 2010, IFOPA implemented the first annual Jeannie L Peeper Awards which recognize outstanding 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 to celebrate the 25th anniversary of the Association.
In early 2014, in recognition of the explosion of worldwide FOP research since the gene discovery in 2006, and with the prospect of clinical drug trials in the near future, IFOPA appointed its first Global Research Development Director to partner with research groups internationally in the development of therapeutic approaches for the treatment of FOP.
July 2014 was a milestone in the history of IFOPA - the first clinical trial of a drug to treat FOP. A Phase II clinical trial investigating palovarotene for the treatment of FOP began. Palovarotene is a drug shown to prevent heterotopic bone formation in animal models of FOP.
IFOPA hosted FOP drug development forums in 2014 and 2016, both in Boston, Massachusetts. The forums discuss the important questions and challenges of developing a safe and transformative therapy for FOP. The goals of the meetings are to address questions and knowledge gaps that exist in FOP drug development, stimulate new ideas to help advance development of potential therapies as quickly and efficiently as possible, and facilitate dialogue, collaboration and connections among interested researchers. The forums also include patient panels so that researchers hear the experience and perspective of those living with FOP, factors critical to research, drug development and clinical trials. The 2016 Drug Development Forum attracted 169 attendees from around the world including 38 universities, 13 pharmaceutical companies and a number of government experts, investment firms, and FOP patient and parent advocates. The next Drug Development Forum will be held in Italy in 2017.
In early 2017, as a result of a strategic planning process, IFOPA closed its Orlando office and moved administrative operations to North Kansas City, Missouri. A reorganization plan entailed creation of several new positions enabling the association to focus on its mission. These positions include Director of Research Development and Partnerships, Family Services Director, and Administrative Coordinator. Two additional key functions, FOP Connection Registry Study Manager and Fundraising Events Manager, are handled by contract with consultants.
Use of funds and fund raising
Historically, IFOPA has allocated over 80% of its annual budget to medical research and programs, donating in the range of $350,000 to $650,000 annually to the FOP Laboratory. IFOPA is a GuideStar Gold Participant by virtue of the public information IFOPA provides beyond that available from the IRS. General overhead, defined as a combination of fund raising and management expenses, has for the past decade averaged well below the Association of Fundraising Professionals statement that the average American believes 23 cents on the dollar being spent on such costs is a reasonable figure. The association's financial statements and 990s are posted on the IFOPA website.
IFOPA fund raising results principally from family-organized activities rather than large nationwide events. In addition to the association's own annual appeal, several grants, and traditional family/friends letter drives, the range of family fund raisers includes golf tournaments, barbecues, bingos, auctions, comedy shows, rock concerts, holiday card sales, raffles, suppers, athletic events, and a variety of other social events and receptions. Some of the more unusual fund raisers include an annual Burns Supper in Aberdeen Scotland, an ice fishing contest, and the auctioning of a quilt decorated with a double helical border symbolizing both the DNA double helix and the quest to find a cure. IFOPA staff provide support and advice for families and organizations that host such fund raising activities, sometimes becoming directly involved, but most events are organized locally. IFOPA generates modest revenue from the sale of branded merchandise such as T-shirts, books and bracelets through its website. In 2010, the association established the Jeannie Peeper Heritage Society, a fund raising program that targets major donors and estate giving.
Medical and scientific advisors
IFOPA's medical and scientific advisors are Frederick S. Kaplan, MD, Eileen M. Shore, PhD, and Michael Zasloff, MD PhD. The foregoing advise the association on issues such as family support and counseling, dissemination of medical documents and treatment guidelines, medical document translation, physician awareness strategies, research funding requests and initiatives, and other matters for which their expertise is required.
Dr. Kaplan is the Isaac and Rose Nassau Professor of Orthopaedic Molecular Medicine and Chief of the Division of Orthopaedic Molecular Medicine at the Perelman School of Medicine at the University of Pennsylvania. Kaplan co-directs the Center for Research in FOP and Related Disorders and is recognized as the world's leading expert on genetic disorders of heterotopic ossification and skeletal metamorphosis. In 1997, Kaplan was awarded the first endowed chair in the USA for orthopaedic molecular medicine. In 2006, Newsweek named Kaplan as one of "15 people who make America great". In 2009, Kaplan was elected to the Institute of Medicine, an organization established by the United States National Academy of Sciences to honor professional achievement in the health sciences.
Dr. Eileen Shore is the Cali and Weldon Research Professor in FOP, and Professor of Orthopaedic Surgery and Genetics in the Perelman School of Medicine at the University of Pennsylvania, Co-Director of the Center for Research in FOP and Related Disorders, and director of the FOP Molecular Biology Laboratory. She is a past-president of the Advances in Mineral Metabolism (AIMM) Board of Directors and was recently elected to the American Society of Bone and Mineral Research (ASBMR) Council. Shore was awarded a PhD from the University of Pennsylvania (Cell and Molecular Biology) followed by post-doctoral training in cell biology at the Fox Chase Cancer Center in Philadelphia. Shore’s collaboration with Kaplan led to the discovery of the mutated genes in both FOP and POH Progressive osseous heteroplasia.
Dr. Michael Zasloff is Professor of Surgery and Pediatrics, and Director of Immunology at the Transplant Institute of the Georgetown University School of Medicine. In the early 1980s, during his tenure at the National Institutes of Health as Chief of the Human Genetics Branch, he began clinical and basic studies of FOP and helped found the IFOPA with Jeannie Peeper. In 1989, as the Upham Professor of Pediatrics and Genetics at the University of Pennsylvania and Chief of the Division of Human Genetics of the Children's Hospital of Philadelphia, he began his collaboration with Dr. Fred Kaplan to find both the cause and cure of FOP.
Services and programs
As a result of the rareness of FOP, the condition is little known even among medical clinicians. Close to 90% of FOP patients worldwide are misdiagnosed. In such circumstances, the association directly supports research, makes information about FOP including symptoms and treatment guidelines available to both physicians and families, and supports afflicted families with mentoring, family meetings and an information network. Below are IFOPA's programs of research, education, family support, and advocacy. Additional information about these programs, including downloadable reports, articles and other materials, may be obtained from the IFOPA website.