International FOP Association, Inc.

Fund research, find a cure, support families ... worldwide

aka IFOPA   |   North Kansas City, MO   |  www.ifopa.org

Mission

To fund research to find a cure for FOP while supporting, connecting and advocating for individuals and their families, and raising awareness worldwide.

Ruling year info

1989

Executive Director

Michelle Davis

Main address

1520 Clay Street Suite H2

North Kansas City, MO 64116 USA

Show more contact info

EIN

59-2918100

NTEE code info

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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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

One of the rarest, most disabling genetic conditions known to medicine, fibrodysplasia ossificans progressiva (FOP) causes bone to form in muscles, tendons, ligaments and other connective tissues. Bridges of extra bone develop across joints, progressively restricting movement and forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine of one normal organ system turning into another. There is no treatment or cure. The IFOPA funds research to find a cure for FOP while supporting, connecting and advocating for individuals with FOP and their families, and raising awareness worldwide.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Medical Research

Research is a significant part of the IFOPA’s mission (60 cents of every dollar spent) 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. Key initiatives include:

• Discovery research at the University of Pennsylvania Center for Research in FOP and Related Disorders and multiple IFOPA-funded grants for immunological response and biomarker research in the Million Dollar Bike Ride Pilot Grant Program
• Targeted research to develop therapies for FOP through the ACT (Accelerating Cures and Treatments) for FOP Grant Program
• A global, voluntary clinical study managed by the IFOPA through the FOP Registry – a single database that collects disease information directly from individuals with FOP through a secure website
• Research infrastructure initiatives that enable FOP research through an open-access FOP mouse model, Biobank and FOP prevalence study
• International research meetings sponsored by the IFOPA. The biennial Drug Development Forum provides a unique opportunity to bring together pharmaceutical companies, clinicians, academic researchers and FOP families. The Biomarker Consortium is focused on discovery, development, qualification, and regulatory acceptance of biomarker(s) for FOP, important measures that have the potential to speed up clinical trials and drug development

Population(s) Served

While the IFOPA’s ultimate vision is a cure for FOP, our mission tells more about our goals for individuals living with FOP – to support, connect and advocate for individuals with FOP and their families. These investments are 18% of our budget. Our largest family education and support investment is the Annual Family Gathering – an opportunity for FOP patients and their families and caregivers to learn from the world’s leading FOP experts, hear the latest clinical trial updates, participate in one-on-one meetings with doctors and dentists, and connect with other FOP individuals and families. We hold this event every year and move it around the country so that those with FOP who have trouble traveling long distances will be able to attend closer to home.
Resource Connect: Everyday Tools for Independent Living is another significant education and support program of the IFOPA. While we are thrilled with the tremendous advances being made in the development of drug treatments for FOP, we recognize that many of those living with FOP have already experienced enough bone growth and joint loss that, despite new treatments, will still make tools for independent living necessary for several generations of people living with FOP. The Resource Connect Program empowers individuals with FOP and supports their caregivers by promoting independence and a problem-solving mindset as a critical tool to cope with FOP progression. Resource Connect raises awareness and teaches FOP patients, caregivers and physicians how to use tools and other adaptive devices for dressing, eating, cooking, sleeping, hygiene and more. As part of the program several tools will be provided to families free of charge and a library of resources will be built.
The IFOPA’s Resilient Living Program offers people with FOP, families and caregivers the tools to improve emotional health and coping skills and reduce anxiety and depression as they face the challenges of this disease.
The IFOPA also sponsors the International President’s Council, a network of volunteers from 20 countries who are committed to helping their national and regional FOP communities by keeping FOP families connected and informed about treatments and research.
With each announcement about clinical studies and trials, we continue to see that there is a lack of education about the drug development process and clinical studies and trials. The IFOPA is developing two educational videos that will be translated in up to 10 languages, as well as developing a robust clinical studies and trials portion of our website ifopa.org.

Population(s) Served

Our awareness campaigns (9% of our budget) are focused in two areas. First, we support families as they educate their communities (family, friends, schools, co-workers) about FOP. Second, we build targeted awareness campaigns to end misdiagnosis for patients and avoid activities that could cause the disease to advance more rapidly.
FOP is one of the 7,000 known rare diseases. Physicians and supporting health care professionals could never be expected to know the signs and symptoms of every single one. However, for FOP patients the consequences of misdiagnosis can be devastating – biopsies of the swellings that occur during flare-ups cause the disease to become more aggressive and some FOP patients have even been subjected to chemotherapy when the swellings are believed to be cancerous tumors. In 2019, the IFOPA is embarking on a mission to better educate physicians and health care workers around the world about the proper diagnosis of FOP and appropriate next steps (including referral to a network of FOP experts) when they suspect a patient has FOP.
Our goal is an awareness campaign that is focused on targeting the audiences that come in frequent contact with potential patients, such as those in the pediatric medical community. Targeting the pediatric medical community is particularly important as it often takes months, if not years, for families to get the proper diagnosis. This campaign will use medical conferences, resource materials, a website (coulditbefop.org), webcasts and search engine optimization to direct the medical community to safe diagnosis procedures and provide connections to FOP experts through a searchable online Health Care Providers Directory.

Population(s) Served

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our vision is a cure for FOP, accessible worldwide. Our goals describe our plan to achieve our mission and vision.

Goal I: Catalyze the highest-quality research on FOP to drive towards treatment and a cure by funding research, developing a research infrastructure, and promoting research connections

Goal II: Serve as a trusted resource to people with FOP and their families by providing flexible and tailored support and connections through all stages of life with FOP

Goal III: Enable informed decision-making about treatment and research participation by the community of people with FOP

Goal IV: Equip FOP organizations based outside of the US to serve individuals with FOP and their families in their respective geographic areas

Goal V: Serve as a voice for people with FOP and families by building targeted awareness and providing targeted advocacy

Goal VI: Equip Board of Directors to provide strategic leadership for implementation of the strategic plan, rather than day-to-day operational support

Goal VII: Develop and implement an updated staff structure to support implementation of strategic planning goals in line with the IFOPA’s mission

Goal VIII: Develop a diversified, sustainable and growing fundraising program to sustain the IFOPA in the short- and long-term

The IFOPA invests the majority of our income (60%) in research to increase scientific understanding of FOP and fund research to develop treatments and, one day, a cure. The IFOPA not only directly funds research, but builds research infrastructure to facilitate research. Today, and even when treatments are developed and approved, there is a a need to educate and support families living with a debilitating, chronic disease; this work is 18% of our budget. While some programs focus on disease management and education and support on clinical studies and trials, the IFOPA has built programs to increase emotional health, not just of the patient, but the whole family, as well as to equip those living with disabilities to live more independently. The IFOPA uses a variety of strategies to support our work - supporting families in their fundraising efforts; IFOPA-led campaigns on Rare Disease Day, FOP Awareness Day, #GivingTuesday, and at year-end; the Focus on Possibilities Monthly Giving Program; Cars2CureFOP; Facebook fundraising; major gifts; and event and program sponsorship from industry partners.

The IFOPA provides the majority of its programs and services virtually to FOP patients and families, as well as physicians and researchers, around the world. As such, the IFOPA does not have a formal office, but storage space in North Kansas City, MO. The IFOPA employs an efficient and effective staff who each work remotely from their homes. Governance is provided by an elected, volunteer board of directors of nine to 15 members drawn from the USA and abroad. The Board is primarily comprised of patients and family members. The IFOPA has a robust volunteer committee structure which includes the following committees: Executive, Finance, Audit, Board Development & Nominating, Research, Fund Development, Family Services, Advocacy & Awareness, and the International President's Council. The IFOPA provides a comprehensive website that can be translated into any language and includes a wide range of information on FOP research, disease management, clinical studies and trials, and patient and family support. To connect the FOP community, the IFOPA also manages robust social media networks, including Facebook, Twitter, LinkedIn, Pinterest, Instagram and YouTube.

In its 30 year existence, the IFOPA has donated over $11 million in FOP research grants, and currently donates nearly $900,000 in research grants annually. We are proud that 78 cents of very dollar funds programs and services. In the beginning the IFOPA only funded basic research; now we fund basic and translational research and we will continue to build out our research infrastructure programs. In the last year the IFOPA has expanded our family education and support programs to include emotional support and independent living. These programs will continue to expand in the US and worldwide. There are currently three active worldwide FOP clinical trials with several more expected to launch in the next year. The IFOPA will be developing more resources to educate patients and families about drug development and clinical trials so that clinical trials are able to progress. As potential drug treatments go before the FDA the IFOPA will ensure the patient voice is heard. The IFOPA is eager to launch our awareness campaign for the pediatric health care community this year so that patients can be diagnosed earlier, connected to FOP experts and appropriate medical care, and that activities that could cause the disease to advance more rapidly are avoided. The financial support of our individual and corporate donors continues to grow and we are grateful for their belief in our vision and mission and their support of our annual activities.

Financials

International FOP Association, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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International FOP Association, Inc.

Board of directors
as of 6/28/2019
SOURCE: Self-reported by organization
Board chair

Amy Gordon

Melton Sales

Term: 2018 - 2019

Chris Bedford-Gay

Skillsarena Corporate Ltd., FOP Friends

Nancy Sando

Community Volunteer

Gary McGuire

US Dow Chemical

Paul Brinkman

Retired

Amy Gordon

Melton Sales

Joseph Martucci

Community Volunteer

Rory Otto

Prestige Consumer Healthcare

Danielle Fraser

Kristi Gonzales

Conner Strong & Buckelew, LLC

David Rocke

University of California, Davis

Megan Olsen

The Technology Group at One Workplace

Chrissy Flexer

Joshua's Future of Promise, Allentown Fairgrounds

Jo Martucci

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    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? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No