Download International FOP Association, Inc.

International FOP Association, Inc.
Summary
Contact Information
Nonprofit
International FOP Association, Inc.
Address
101 Sunnytown Road
Suite 208
Casselberry, FL 32707
Phone
(407) 365-4194
Fax
(407) 365-3213
Web Site
www.ifopa.org
At a Glance
IRS Ruling Year
1988
Organization's type of tax exempt status
Public Supported Charity
1
Statements
Statements
Mission
Fund research to find a cure for Fibrodysplasia Ossificans Progressiva while supporting individuals and their
families through education, public awareness and advocacy.
Impact
A constant focus of the IFOPA is funding for FOP research being conducted at the FOP Laboratory at the
University of Pennsylvania School of Medicine. Funding for this research has led to the discovery of the gene
that causes FOP. Funding is also provided to FOP researchers and institutions through the Competitive
Research Grant. Applications are reviewed by a Scientific Advisory Board for approval, funding is provided at
milestone markers throughout the research efforts.
In July 2015, the IFOPA launched the FOP Connection Registry with the following objectives in mind:
• To organize the international FOP community for potential participation in clinical trials or other research
studies
• To enable FOP patients worldwide to report data on their own disease state in a shared forum, ultimately
empowering both individual patients and the community as a whole
• To improve the collective understanding of FOP natural history and its functional, emotional, and
psychological impact over time, and when treatments are available
• To advance the understanding of FOP treatment outcomes.
One year later, the Registry has 178 individuals with FOP enrolled from 28 countries and we expect
enrollment to increase rapidly as we introduce the registry in several languages over the latter half of 2016
and into 2017.
The IFOPA continues to focus on translating and distributing the IFOPA Medical Binder to international
individuals with FOP who speak Dutch, French, German, Hindi, Italian, Polish and Spanish. The website is
being redesigned to provide FOP individuals with an online directory of personal contact information, serve as a
better fundraising platform and help to spread awareness of this very rare condition, FOP.
Needs
The primary needs of the International FOP Association are funding to support FOP research and member
programs, volunteers to assist with fundraisers and opportunities to provide awareness and education to
physicians, healthcare facilities and communities worldwide.
Background
The International FOP Association (IFOPA) was founded in 1988 as a support organization allowing people who
have FOP, Fibrodysplasia Ossificans Progressiva, and their families to share information, support medical
research, and educate physicians and other interested individuals about FOP. FOP is a rare disease in which
normal bone grows in abnormal locations, such as muscles, ligaments, tendons, and other connective tissues.
The difficulties of FOP are magnified by the isolation of having a condition that occurs in only one in two million
births. Prior to the creation of the IFOPA, most of those suffering the consequences of FOP did so without ever
knowing another person with FOP for guidance and commiseration. In addition to creating and maintaining the
FOP Research Lab, the IFOPA works to minimize the suffering of those with FOP by providing a forum for the
exchange of ideas, emotional support, coping mechanisms, experiences and more.
2
CEO/Executive Director Statement
Dear Friends,
The IFOPA is a wonderful, grassroots organization that is committed to the lives of those suffering from this
rare, neglected bone disorder, FOP.
The FOP community is strong in its bond of finding a cure, however the rarity of FOP provides challenges in
acquiring financial support until one understands the larger FOP research picture and how finding a cure for
FOP may affect a multitude of other bone disorders.
This community of those afflicted with FOP and their families are a true testament to the power of HOPE that
resides in each of us.
When you have an opportunity to meet them, you won't be the same. You will want to join us in this fight against
time, so that we can stop the progression of bodies turning into bone.
We invite you to come and learn more about the IFOPA!
Board Chair Statement
Dear Friends,
The IFOPA takes pride in our financial efficiency, accountability to donors, and transparency. We work to use
every dollar contributed as efficiently as possible. Historically, 80-90% of your contributions have gone toward
funding medical research and member programs.
The IFOPA’s support for medical research led to the FOP gene discovery in 2006. Our program dollars have
funded four (4) International Symposia as well as numerous family gatherings and informational meetings,
$40,000+ in LIFE Award scholarships to persons with FOP, the FOP Connection and Milestones publications,
and more.
We continue to financially support medical research, which is more important than ever as the FOP Lab and
researchers at other academic institutions and pharmaceutical companies are narrowing in on potential
treatment protocols. We are also developing new and better programs to support our members, with special
attention to ensure access to those programs by those outside the United States.
Thank you for supporting the IFOPA. Our pledge to donors is to continue to keep our overhead at or below the
industry average, to maximize the percentage of your contributions that go to research and programs, and to
spend our funds wisely so we can find treatments and a cure for FOP while supporting individuals and their
families.
We invite you to be a part of this herculean effort.
Paul Brinkman
Chairman of the Board
Areas of Service
Geographic Areas Served
3
Areas
Internationally
FL - Brevard
FL - Lake
FL - Orange
FL - Osceola
FL - Polk
FL - Seminole
FL - Volusia
National
We are the worldwide support organization for anyone that is diagnosed with Fibrodysplasia Ossificans
Progressiva (FOP). Currently there are 800 FOP individuals worldwide representing over 60 countries.
Service Categories
Primary Organization Type
Diseases Disorders & Medical Disciplines
Secondary Organization Type
Human Services
4
Programs
Programs
Medical Research
Description
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.
Class Code
Diseases, Disorders & Medical Disciplines, General/Other
Class Sub Code
Diseases, Disorders & Medical Disciplines, General/Other
Population Served
People/Families of People with Health Conditions People/Families with of
People with Disabilities
Budget
$500,000.00
Long Term Success
The long term success of research is that a treatment and/or cure is found
for those suffering from FOP and other bone related illnesses.
The discovery of the FOP gene in 2006, along with emerging insights into
mediated heterotopic ossification reveals a new road map with at least
four plausible approaches to disarming the FOP bomb.
The mutant FOP gene encodes an overactive switch that needs to be
"turned off" or more probably "turned down." When the FOP gene was
discovered in 2006, there were no drugs available to turn-off the gene or
effectively modulate its activity. Such lead compounds have now been
indentified but may be too powerful and dangerous to use in humans.
What we now have are compounds that can turn-off the damaged switch.
What we need is a dimmer.
Short Term Success
Each year, new research strides are made at the FOP Lab at the
University of Pennsylvania School of Medicine and by colleagues and
collaborators around the world. These are documented in the IFOPA
published Annual Report of the Fibrodysplasia Ossificans Progressiva
(FOP) Collaborate Research Project.
Program Success Monitored By
Examples of Program Success
The discovery of the FOP gene in 2006 is a perfect example of what the
research dollars spent by the IFOPA are doing for FOP research.
5
L.I.F.E Awards
Description
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.
Class Code
Philanthropy, Voluntarism & Grantmaking, General/Other
Class Sub Code
Philanthropy, Voluntarism & Grantmaking, General/Other
Population Served
People/Families with of People with Disabilities
Budget
$6,000.00
Long Term Success
The long term affect is that those with FOP are provided something that
helps them to live their life more independently, and allows them to
become a productive member of society.
Short Term Success
Program Success Monitored By
Examples of Program Success
Members with FOP have been provided funding to assist with: assistance
service dogs, laptop computers, pool ramps, wheelchairs, college tuition
and vehicle adaptations.
6
International Support
Description
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.
Class Code
Diseases, Disorders & Medical Disciplines, General/Other
Class Sub Code
Diseases, Disorders & Medical Disciplines, General/Other
Population Served
Other Named Groups
Budget
$0.00
Long Term Success
The long term success is that those with FOP in every country of the world
are properly diagnosed. The current misdiagnosis rate is over 85%. By
reaching out to the medical community and FOP community in with
materials in multiple languages, can help to reduce this extremely high
rate of misdiagnosis and help to stop unneccessary medical procedures
that quickly increase the effects of FOP.
Short Term Success
As the only organization worldwide devoted to FOP, we are able to
immediately provide all those diagnosed with FOP relevant, important
medical information so that they can properly manage their care. This
requires the ability to provide the materials in multiple languages.
Program Success Monitored By
Examples of Program Success
When you have grown up thinking you are the only person that is afflicted
in such a way that you can not stand up, lift your arms over your head,
brush your own teeth or sit down in a regular chair, you feel alone. The
IFOPA has diminished the barriers that once existed by providing a
community for everyone with FOP to come together. Now, there is
support for each of our members to not feel alone anymore.
7
Public Awareness
Description
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.
Class Code
Diseases, Disorders & Medical Disciplines, General/Other
Class Sub Code
Diseases, Disorders & Medical Disciplines, General/Other
Population Served
General/Unspecified
Budget
$0.00
Long Term Success
Short Term Success
Program Success Monitored By
Examples of Program Success
Member Education & Support
Description
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.
Class Code
Health Care, General/Other
Class Sub Code
Patient & Family Support
Population Served
General/Unspecified
Budget
$0.00
Long Term Success
Short Term Success
Program Success Monitored By
Examples of Program Success
8
CEO Comments
The International FOP Association's programs include the staffing and support of the FOP research laboratory
at the University of Pennsylvania, where dedicated physicians and technical support race against time to
discover a treatment, and perhaps a cure, for the devastating effects of FOP. The IFOPA also maintains a
Resource Center of articles, videos, and scientific documents for the education of the general and medical
community about FOP. Other key quality programs and services that are provided worldwide include
educational webinars, a guidebook on FOP for families, a mentoring system, and funding for independence
assistance, an interactive communication system for members, and regional family and member gatherings.
9
Impact
Goals
Our goal is to find a cure for Fibrodysplasia Ossificans Progressiva.
Strategies
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.
Capabilities
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.
Indicators
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.
Progress
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
10
Management
CEO/Executive Director
Executive Director
Organization is Volunteer Lead
Experience
The organization is Volunteer lead. The IFOPA does not have a paid CEO or Executive Director
Former CEOs
Name
Term
Linda Daugherty
2001 - Feb 2010
Karen Revels
2010 - Feb 2011
Senior Staff
Victoria Mandracken
Title
Communications and Membership Manager
Experience/Biography
Denise Vietti
Title
Operations Manager
Experience/Biography
Susie Weidner
Title
Accountant
Experience/Biography
Staff
Full Time Staff
3
Part Time Staff
0
Volunteers
365
Contractors
3
Retention Rate
60%
State Information
State Charitable Solicitations Permit?
Yes Mar 2017
State Registration
Yes Mar 2017
Management Comments
CEO/Executive Director/Board Comments
11
Plans & Policies
Plans and Policies
Organization has a Fundraising Plan?
No
Organization has a Strategic Plan?
Under Development
Management Succession Plan?
No
Organization Policy and Procedures
Yes
Nondiscrimination Policy
Yes
Directors and Officers Insurance Policy
Yes
Management Information
Whistleblower Policy
Yes
Document Destruction Policy
Yes
Management Reports To Board
Yes
CEO/Executive Director Formal Evaluation
N/A
CEO/Executive Director Formal Frequency
Annually
Senior Management Formal Evaluation
Yes
Senior Management Formal Evaluation Frequency
Annually
Collaborations
The IFOPA collaborates with and funds the FOP Laboratory at the University of Pennsylvania School of
Medicine.
The IFOPA collaborates with the US Bone and Joint Decade, The Rare Bone Disease Patient Network and the
National Organization for Rare Disorders.
12
Governance
Board Chair
Board Chair
Paul T Brinkman
Company Affiliation
Community Volunteer
Term
Jan 2016 to Dec 2017
Board CoChair
Board CoChair
Amy Gordon
Company Affiliation
Community Volunteer
Term
Jan 2016 to Dec 2017
Board Members
Name
Affiliation
Status
Chris Bedford-Gay
Turtlez Ltd
Voting
Paul T Brinkman
Retired
Voting
Amy Gordon
Melton Sales
Voting
Moira Liljesthrom
Community Volunteer
Voting
Joseph Martucci
Community Volunteer
Voting
Gary McGuire
US Dow Chemical
Voting
Karen Munro
Community Volunteer
Voting
Rory Otto
Community Volunteer
Voting
Nancy Sando
Community Volunteer
Voting
Carol Tilley
Retired
Voting
Gail Weakland
Retired
Voting
Board Demographics - Ethnicity
African American/Black
0
Asian American/Pacific Islander
0
Caucasian
10
Hispanic/Latino
1
Native American/American Indian
0
Other
00
Board Demographics - Gender
Male
4
Female
7
Not Specified
0
Governance
13
Board Term Lengths
2
Board Term Limits
0
Board Meeting Attendance
89%
Number of Full Board Meetings Annually
6
Written Board Selection Criteria?
Yes
Written Conflict of Interest Policy?
Yes
Percentage Making Monetary Contributions
75%
Percentage Making In-Kind Contributions
100%
Risk Management Provisions
Directors and Officers Policy
Employment Practices Liability
Standing Committees
Audit
Board Development / Board Orientation
Development / Fund Development / Fund Raising / Grant Writing / Major Gifts
Finance
Investment
Program / Program Planning
Communications / Promotion / Publicity / Public Relations
14
Financials
Fiscal year
Fiscal Year Start
Jan 01, 2016
Fiscal Year End
Dec 31, 2016
Projected Revenue
$1,107,000.00
Projected Expenses
$1,769,634.00
Endowment Value
$0.00
Percentage
0%
Detailed Financials
Revenue and Expenses
Fiscal Year
Total Revenue
Total Expenses
Revenue Sources
Fiscal Year
Foundation and Corporation
Contributions
Government Contributions
Federal
State
Local
Unspecified
Individual Contributions
Indirect Public Support
Earned Revenue
Investment Income, Net of Losses
Membership Dues
Special Events
Revenue In-Kind
Other
2014
$1,830,617
$992,349
2013
$1,474,621
$837,893
2012
$934,532
$614,209
2014
$0
2013
$430,457
2012
$203,465
$0
$0
$0
$0
$0
$1,032,373
$0
$1,294
$34,004
$4,621
$713,528
$44,797
$0
$0
$0
$0
$0
$0
$554,827
$0
$3,228
$7,357
$6,850
$803,779
$98,580
$0
$0
$0
$0
$0
$0
$73,006
$0
$2,162
$9,471
$7,100
$598,272
$41,056
$0
15
Expense Allocation
Fiscal Year
Program Expense
Administration Expense
Fundraising Expense
Payments to Affiliates
Total Revenue/Total Expenses
Program Expense/Total Expenses
Fundraising Expense/Contributed
Revenue
Assets and Liabilities
Fiscal Year
Total Assets
Current Assets
Long-Term Liabilities
Current Liabilities
Total Net Assets
Short Term Solvency
Fiscal Year
Current Ratio: Current Assets/Current
Liabilities
Long Term Solvency
Fiscal Year
Long-Term Liabilities/Total Assets
2014
$837,115
$94,259
$60,975
$0
1.84
84%
3%
2013
$673,843
$99,099
$64,951
$0
1.76
80%
4%
2012
$476,709
$72,818
$64,682
$0
1.52
78%
7%
2014
$3,486,104
$961,365
$0
$87,504
$3,398,600
2013
$2,563,142
$2,552,629
$0
$17,008
$2,546,134
2012
$1,915,094
$1,679,562
$0
$9,743
$1,905,351
2014
10.99
2013
150.08
2012
172.39
2014
0%
2013
0%
2012
0%
2013
Special Events
$803,779
2012
Special Events
$598,272
Foundations and
Corporations
$430,457
Individuals $124,370
Foundations,
Corporations
$203,465
Individuals $73,006
Top Funding Sources
Fiscal Year
Top Funding Source & Dollar Amount
2014
Foundations,
Corporations and
Individuals
$1,032,373
Second Highest Funding Source & Dollar Special Events
Amount
$713,528
Third Highest Funding Source & Dollar
Amount
In-Kind $44,797
Capital Campaign
Currently in a Capital Campaign?
No
Goal
0
Comments
Foundation Comments
Financial figures taken from IRS Form 990. 990 and audit are reconciled.
In-kind revenue includes noncash reported on IRS form 990.
16
Disaster Plans
Disaster Plans
Organization is a member of Voluntary
Organizations Active in Disaster (VOAD)?
Created 10.29.2016.
No
Copyright © 2016 Central Florida Foundation
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