Disease, Disorders, Medical Disciplines
Fund research to find a cure for Fibrodysplasia Ossificans Progressiva while supporting individuals and their families through education, public awareness and advocacy.
1520 Clay Street Suite H2
North Kansas City, MO 64116 USA
malformed toes, genetic, Patient support, research, IFOPA, FOP, Fibrodysplasia Ossificans Progressiva,
Specifically Named Diseases (G80)
Services to Promote the Independence of Specific Populations (P80)
IRS Filing Requirement
This organization is required to file an IRS Form 990 or 990-EZ.
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What are the organization's current programs, how do they measure success, and who do the programs serve?
SOURCE: Self-reported by organization
Research is a significant part of the IFOPA's mission and the key to solving the mystery of FOP. Research efforts can focus on a treatment and cure, including developing medications that alter not just the symptoms of the disease but the disease itself.The FOP Research Laboratory, created in 1992, is located at one of the most prestigious medical and research institutions in the country, the University of Pennsylvania School of Medicine. Led by Frederick Kaplan, M.D., and Eileen Shore, Ph.D., the FOP Research laboratory's dedicated research team includes three principal investigators with many post-doctoral fellows, scientists, students and staff. This core team collaborates with physicians and scientists worldwide to develop treatments and, someday, a cure for FOP that of finding a treatment and a cure. Since the gene discovery in 2006, we are now closer than ever to reaching this goal. Supporting this program is critical not only to developing treatments for people with FOP, but to also unlocking the mysteries of many common skeletal conditions such as osteoporosis, osteoarthritis, post-amputation treatment, and specific complications of hip replacements, spinal cord injuries, head injuries and some heart valve disorders.
The Quality of L.I.F.E. award, signifying Living Independently with Full Equality, is a program designed to assist people with FOP to live their lives more independently. The award provides up to $1,500.00 per person and is intended for use in purchasing items that improve the health, welfare and independence of members with FOP of all ages. Many members endure costly medical expenses and have a difficult time purchasing items that assist them with their everyday lives. Examples of such items include service dogs, wheelchairs, education or vocational training, wheelchair ramps or lifts, and therapeutic mattresses, among others.A gift to the IFOPA's Quality of L.I.F.E. Award Program allows you to directly impact the lives of FOP members desiring independence. Support to this program is critical to FOP members.
The FOP community spans among 60+ countries worldwide. Of these 60+ countries, 55 do not speak English and remain unaware of research findings and support initiatives until they are translated into their native language. The Medical Management of Fibrodysplasia Ossificans Progressiva: Current Treatment Considerations is the most important document a person with FOP can receive as it explains the necessary precautions and procedure protocols to ease the symptoms of FOP emergency treatment guidelines and instructions for handling a patient with FOP; an emergency USB flash drive to house important medical information; and a portable pill holder to carry an emergency dose of medication. Having personalized medical information readily at-hand helps to reduce stress and can provide the opportunity for our patients to receive better care. In order to provide all of these documents in each native language is an expense we need funding for so those with FOP are not isolated from the FOP community and from important medical information. Our international communities' wish to host meetings for families in their regions. To hold such an event successfully, these communities need necessary funding as well as resources and educational materials translated into their language. To have the IFOPA website in several languages will improve the communication of information and resources for those with FOP in countries that do not speak English, as well as decrease the number of misdiagnoses and get those with FOP the proper care they need.
FOP is one of the rarest bone disorders known in the world. Very few people have heard of FOP, let alone know all that it entails -- including medical professionals. Increasing awareness among medical professionals, political officials, and the public at large is critical to serving our population. Increased awareness will result in additional funding for research and member programs, and should drastically reduce the number of devastating misdiagnoses. The IFOPA raises awareness through advocacy, through the dissemination of educational and treatment information on its website, in brochures and on DVDs, and by maximizing every media opportunity available to inform the public and the medical community about FOP.
Member Education & Support
Support, both emotional and functional, is imperative to the health of those living with FOP as well as their families. Overcoming certain obstacles can often be as frustrating for family members as it is for the person affected. The IFOPA develops and drives various programs for our membership including but not limited to educational webinars, a website to educate families and medical professionals, a guidebook for families on how to cope with FOP, a mentoring system for those facing the difficulties of FOP, grants for independent living assistance, an online interactive communication system for members, and regional family and member symposiums and support meetings.
Where we workNew!
Five powerful questions that require reflection about what really matters - results.
SOURCE: Self-reported by organization
What is the organization aiming to accomplish?
What are the organization's key strategies for making this happen?
What are the organization's capabilities for doing this?
How will they know if they are making progress?
What have and haven't they accomplished so far?
Our goal is to find a cure for Fibrodysplasia Ossificans Progressiva.
Our strategy is to fund FOP research through continuous grassroots fundraising. With an extremely small patient community, we lack the means to mount high profile national campaigns, and instead rely primarily on local fundraising and donations from families and friends. We also work closely with international FOP communities to promote awareness and encourage international research efforts. We provide advice and support for patients and their families.
IFOPA employs an efficient and effective staff headquartered in Orlando, Florida. Governance is provided by an elected volunteer board of directors of nine to 15 members drawn from the USA and abroad. IFOPA provides a comprehensive website in more than 10 languages that includes a wide range of information regarding FOP research, disease treatments and family support. IFOPA provides an extensive Wikipedia article detailing the history of the association, our fundraising activities, and a variety of other information resources. Our Research Committee works closely with the FOP Lab at the University of Pennsylvania and with international research groups to coordinate research activities and support.
Given our strong focus on fund-raising, total donations received are our primary indicator. In recent years, annual donations have been in the range of $1,000,000+. IFOPA is recognized as the primary research supporter of the FOP Lab at the University of Pennsylvania.
In its 28 year existence, IFOPA has donated over $18 million to FOP research, and currently donates approximately $500,000 annually. Net surpluses (funds remaining after expenses) are invested to establish long-term association stability and funding future drug trials. Net assets at the end of 2015 were approximately $4.2 million. There are currently two separate clinical trials underway by Clementia Pharmaceuticals and Regeneron Pharmaceuticals
International FOP Association, Inc.
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The people, governance practices, and partners that make the organization tick.
as of 11/4/2017
Term: 2016 - 2017
Term: 2016 - 2017
US Dow Chemical
SOURCE: Self-reported by organization
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.SOURCE: Self-reported by organization
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?
Has the board conducted a formal, written assessment of the chief executive within the past year?
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Has the board conducted a formal, written self-assessment of its performance within the past three years?