FOP CONNECTION

FOP Connection
News for Members of the International FOP Association Table of Contents
FOP News
• A Message from the IFOPA Board Chair . . . . 1
• Competitive Research Grant Recipients . . . . 2
December 3, 2015
FOP News
A Message from the IFOPA
Board Chair Marilyn Hair
• Understanding the Broader Impact of FOP. . 3
I recently delivered a guest
lecture in Reflections On
Research, Responsibility &
Society, a senior-level
course in the Dept. of
Bioethics & Humanities at
the University of
Washington. The topic was
the IFOPA partnership
with pharmaceutical
companies.
• First Article from FOP Flare Up Survey. . . . . . 5
• Clementia Phase 2 Clinical Trial. . . . . . . . . . . . . 5
• Clementia FOP Natural History Study. . . . . . 5
• Visit our website for Clinical Trial Pointers
• Visit our website for the Latest IFOPA News
including research and pharmaceutical articles
Our International Community
• News from FOP Australia . . . . . . . . . . . . . . . . . . 6
• Upcoming FOP Meetings. . . . . . . . . . . . . . . . . . . 6
Focus on Fundraising
• Awake for A Cure . . . . . . . . . . . . . . . . . . . . . . . . . . 7
• ZipperQ 4 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
• Clayton University Health Fair. . . . . . . . . . . . . . 8
• 6th Annual Mud Run becomes Snow Run!. . . . 8
• Thank you Capital Funding Group . . . . . . . . . . 8
• Current Fundraising Event. . . . . . . . . . . . . . . . . . 8
Membership News
• Renew Your Membership and Vote . . . . . . . . . . 9
• Membership Spotlight. . . . . . . . . . . . . . . . . . . . . . 9
• Take Part in Our Misson. . . . . . . . . . . . . . . . . . . 10
• Friendly Reminders. . . . . . . . . . . . . . . . . . . . . . . 11
IFOPA Staff:
• Operations: denise.vietti@ifopa.org
• Accountant: sue.weidner@ifopa.org
• Communications: victoria.mandracken@ifopa.org
Vol. 2 Issue 4
The students could hardly
appreciate the enormity of pharmaceutical interest in
FOP without some background: I told them that FOP
is an ultra-rare disease that was first mentioned in the
medical literature in 1692; that Michael Zasloff researched
FOP at the National Institutes of Health (NIH) in the
1980s; Dr. Zasloff gave the names of his FOP patients
at the NIH to Jeannie Peeper; Jeannie started the FOP
Connection newsletter and founded the IFOPA which
formed a research partnership with Fred Kaplan and the
FOP Collaborative Research Project at the University of
Pennsylvania, the FOP lab.
My family discovered the IFOPA thanks to a letter my
daughter’s doctor wrote to the NIH and their answer that
a new patient group had formed. We joined the IFOPA
in 1991 and attended the first FOP Symposium in
Philadelphia.
The Internet helped FOP patients and the IFOPA find
each other, and the IFOPA grew and came to represent the
FOP population worldwide. The most important research
discovery so far came in 2006 when the FOP gene was
identified. The gene discovery was the key that opened new
areas to explore, and FOP research has exploded.
Today, nine years after the FOP gene discovery, more than
30 research and pharmaceutical groups around the world
International Fibrodysplasia Ossificans Progressiva Association
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FOP Connection
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News for Members of the International FOP Association are studying FOP. Since 2014, FOP patients have been
taking part in a Phase II Clinical Trial for palovarotene,
sponsored by Clementia Pharmaceuticals. The clinical
trial is currently enrolling children ages 6-14. This fall,
Regeneron Pharmaceuticals announced their discovery that
Activin A, a molecule in the immune system, plays a role
in heterotopic bone (HO) formation, and found that an
antibody treatment stopped HO in FOP mice.
This July, the IFOPA launched the FOP Connection
Registry, a collection of patient stories and experiences
with the goal to better understand FOP. The IFOPA owns
the information in the Registry and will share it in deidentified form with researchers and pharmaceuticals. The
FOP Registry demonstrates that the FOP community
is well organized and can help support clinical trials. If
you have FOP and haven’t yet joined the Registry, please
consider signing up. Your story is important and you will
help find treatments for FOP!
These are only some IFOPA activities. Find more in this
newsletter and on the IFOPA website.
At the end of my guest lecture, a student called out: ”Your
organization has accomplished so much in such a short
time.” Isn’t that the truth! And I say with conviction
that the accomplishments continue: We can almost see
something coming that will change the course of FOP.
My 2-year term as Chair of the Board concludes this
month. It is a privilege to have been part of the IFOPA for
most of its history, and it has been an honor to serve on and
chair the IFOPA Board during this pivotal time in FOP
research and drug development. Next year I will take some
new but smaller roles in the IFOPA.
IFOPA Announces Recipients
of Competitive Research
Grants
by Betsy Bogard, IFOPA Global Research Development Director
Earlier this year, the IFOPA launched a new researchfunding program to help accelerate development of a safe
and transformative therapy for FOP. The FOP Competitive
Research Grant Program awards one year of funding on a
competitive basis to scientists studying the disease.
We initiated the program’s request for proposals on April
23, 2015 and established a Scientific Advisory Board
to evaluate proposals. The Board is comprised of five
individuals who have expertise relevant to FOP: Vicki
Rosen, PhD, who chairs the Board; Karen Lyons, PhD;
Ernestina Schipani, MD, PhD; Michael Whyte, MD; and
Michael Zasloff, MD, PhD.
We were honored to receive numerous outstanding
proposals up until the submission deadline of July 2, 2015.
After thoughtful evaluation by the Scientific Advisory
Board, in October we were pleased to announce funding for
the three projects listed.
We congratulate the grant recipients and look forward to
following their progress. We thank every program applicant
for their commitment, expertise, and interest in FOP. The
innovative ideas and extraordinary efforts of the entire FOP
research community bring hope to patients and families
living with this devastating disease.
2015 FOP Competitive Research Grant
Recipients
Thank you for the part you play in the IFOPA. And stay
tuned! Together we can make a difference for those with
FOP.
Principal Investigators:
Yuji Mishina, PhD and Benjamin Levi, MD
Marilyn Hair
Chair, Board of Directors
Project Title: Validation of novel diagnostic and targeted
prophylaxis for FOP related heterotopic ossification
P.S. Please renew your membership and it’s easy to request
a sponsored FOP membership. See page 9 for details and
please cast your vote for the IFOPA Board nominees.
Funding Amount: $41,800
2 www.ifopa.org
Institution: University of Michigan, United States
Project Description: The University of Michigan team
plans to define the early chondrogenic environment that
International Fibrodysplasia Ossificans Progressiva Association
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precedes heterotopic bone formation. They then plan to
use a repurposed HIF-1-alpha inhibitor, both alone and
in combination with an ACVR1-specific kinase inhibitor,
to alter this environment and subsequently inhibit the
formation of heterotopic bone in vivo.
Principal Investigators:
Gerard Pals, PhD and Marelise Eekhoff, MD, PhD
Institution: VU University Medical Center, The
Netherlands
Project Title: Assessment of small agents in FOP primary
fibroblast cultures to explore new therapeutic targets
Funding Amount: $55,000
Project Description: The Dutch Amsterdam FOP dedicated
research team (VUMC/ACTA) of the Netherlands
developed an innovative in vitro model to study ectopic
bone formation from very small skin biopsies that can be
obtained safely. In this model small molecular compounds
will be investigated on their treatment potential. The result
will generate new treatment options for FOP and support
personalized treatment in the future.
Principal Investigators:
Paul B. Yu, MD, PhD and Yue Shen, MBBS
Institution: Brigham and Women’s Hospital and Harvard
Medical School, United States
Project Title: The role of exercise in the progression of
fibrodysplasia ossificans progressiva
Funding Amount: $28,000
Project Description: The impact of physical activity on
the progression of FOP is not currently known, and
thus clinicians are unable to provide evidence-based
recommendations to patients on whether or not to pursue
organized athletic activities or regular exercise as part
of their routine. Using a knock-in mouse model which
expresses the classic FOP-causing mutation ACVR1R206H
under endogenous promoter control, they have observed
spontaneous ligamentous and joint ossification that occur
slowly but progressively with age. They will test the impact
of voluntary exercise versus limb immobilization, versus
normal cage activity on the progression of heterotopic
ossification in these mice, hypothesizing that physiologic
levels of activity have a beneficial impact on the disease.
The FOP Connection Registry:
Understanding the Broader
Impact of FOP
by Neal Mantick
In our first peek into the FOP Connection Registry at the
end of August 2015, we proudly reported that after just one
month after launch, 78 members of the FOP community
from 18 countries had enrolled in the Registry. As of the
16th of November 2015, that number has grown to 132
participants from 25 countries. Participants’ ages range
from under one year old to 75 years young, consolidating
many decades of FOP disease information in one Registry
database. Absolutely terrific!
As many of you experience, new bone growth and loss of
joint mobility are the most debilitating characteristics of
FOP and are the primary focus for physicians and FOP
researchers. However, the FOP Connection Registry is
seeking information from you on other aspects of FOP
disease that may also impact your daily lives. In this second
look at the Registry data, we want to share with you some
FOP disease information that is perhaps less talked about.
Below are some data that we hope you will find interesting.
Of the 132 enrolled participants, 80 have completed their
Enrollment Surveys, with the remaining 52 participants
working hard to complete their surveys. Among these
80 participants, we looked at the frequency of medical
and dental care among Registry participants in the past
12 months prior to enrolling into the Registry, as well as
evaluated several other signs of FOP disease.
Of the 72 participants who provided information about
doctor visits in the past 12 months prior to enrolling in
the Registry, the average number of visits was 6 times with
many participants having 0 doctor visits, but with two
participants having greater than 25 doctor visits. Seventythree participants reported less than one (0.6) hospital
admission on average in the past 12 months prior to
enrolling in the Registry, with a range of 0 admissions to
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FOP Connection
News for Members of the International FOP Association 14 admissions. Several common reasons for these hospital
admissions included respiratory infections, falls or other
injuries, dental procedures, and surgical procedures. Finally,
the average number of times participants sought dental
care that did not require a hospitalization in the past 12
months prior to enrolling in the Registry was two times,
with a range of 0 to 10 times. The most common reason for
seeking dental care was for a routine dental check-up and
cleaning.
Table 1: Medical Care
In the past 12 months
prior to enroling in the
Registry:
How many times did you
visit a doctor for any
reason for your physical
health? (N=72)
How many times were
you admitted to the
hospital for any reason?
(N=73)
How many times did
you seek dental care
that did not require a
hospitalization? (N=73)
Average
Range
6 times
0 – greater than 25
0.6 times
0 – 14 times
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Among participants providing information about
other FOP signs, the most commonly reported signs
were symptoms related to the ears (49% of responding
participants), followed by symptoms related to the skin
(36%) and sleep (35%). The least reported signs were
symptoms related to the heart, arteries, and veins (14%
of responding participants) and the glands and hormones
(14%). These data show how FOP affects many different
body systems and may provide you and your physicians
with valuable community-wide perspective on the disease.
This broader range of data is invaluable to FOP researchers
and confirms your shared, global commitment to working
alongside them to advance research toward an FOP
treatment. By assembling your unique stories on how
FOP affects you in one registry database, physicians
and researchers can better understand FOP clinical
characteristics and disease progression among the larger
FOP community, which will contribute to the growing
research efforts that are focused on bringing new FOP
treatments to patients. Together, we can make a difference!
To join the registry go to www.fopconnection.org
2 times
0 – 10 times
Figure 1: FOP Signs
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International Fibrodysplasia Ossificans Progressiva Association
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First Article Published from
the FOP Flare-Up Survey
The IFOPA is thrilled that the first findings from the 2013
international survey of FOP flare-ups have been published.
Thanks to all who made this important publication possible:
the International President’s Council, the translators,
the physicians, the patients and families who completed
the survey, and the research team at the University of
Pennsylvania. Working in collaboration is the way to move
forward! To read the article go to http://onlinelibrary.
wiley.com/doi/10.1002/jbmr.2728/abstract
Paris France
Interested in Participating
in the Natural History Study
Sponsored by Clementia
Pharmaceuticals?
Study is ongoing and open to FOP patients
ages 2 to 65 years old.
If you would like more information call
or email study locations:
USA, California - Helene Favre, PhD at 415-353-9087
helene.favre@ucsf.edu
Interested in Participating
in the Clementia Phase 2
Clinical Trial?
USA, Pennsylvania - Lisa Gardo at 215-294-9112
lisa.gardo@uphs.upenn.edu
Argentina - Leonardo Crama at 0054944195801
leonardo.crama@gmail.com
Study is ongoing
Enrollings FOP patients age 6 to 14.
Australia, Queensland
Linda Bradbury +61 7 3443 7077
l.bradbury@uq.edu.au
If you have a flare-up, or would like more
information call or email:
Canada, Ontario - Not yet recruiting
Stephanie Hedges stephanie.hedges@sickkids.ca
Helene Favre, UCSF at 415-353-9087 or
helene.favre@ucsf.edu
France
Genevieve Baujat, MD at 00-33-7-85-98-05-46
or genevieve.baujat@nck.aphp.fr
Geneviève Baujat, Necker (Paris), 00-33-7-85-98-05-46
or genevieve.baujat@nck.aphp.fr
Italy - Marta Bertamino at +39-349-1033410
martabertamino@libero.it
Jacqueline Vinton, RNOH (London) 0208 909 5425 or
jacqueline.vinton@rnoh.nhs.uk
United Kingdom
Jacqueline Vinton at 0208 909 5425
jacqueline.vinton@rnoh.nhs.uk
International Fibrodysplasia Ossificans Progressiva Association
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FOP Connection
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News for Members of the International FOP Association Our International
Community
News from FOP Australia
by Julie Collins, International President’s Council (IPC) Australia
2015 has proven to be a
groundbreaking year for our
FOP community here in
Australia. The good news
began at the start of the year
with Professor Matt Brown
and his team from the Princess
Alexandra and Lady Cilento
Hospitals agreeing to establish
a clinical trial site in Brisbane
Jarvis Bud, Ollie Collins and
Zach Armstrong meet during
as part of the Clementia
their Clementia Natural Natural History of FOP
History Study visit.
Study. The study site is well
underway, with several patients enrolled, making the trip to
Brisbane. As IPC rep I have met with all of the families on
these visits and it has been wonderful to see them and hear
how well they have been looked after by Professor Brown’s
team. At this stage we only have children up to the age of
18 involved and we are hoping to get some adults interested
in enrolling in the future while the opportunity exists.
In May the inaugural FOP Australia Ltd AGM was
held and the first FOP Australia Ltd Board elected. The
Board has met monthly during the year and has a number
of initiatives underway, including the launching of the
FOP Australia Facebook page and a new website to be
launched early in 2016. Directors and supporters have also
spent many hours completing and entering the necessary
documentation in the hope that we might be granted
tax deductibility as a charity. If we are successful in our
application, it provides a big incentive for people to donate
to us enabling us to better compete for scarce fundraising
dollars. The Board is planning its first major fundraiser
for April of 2016 to coincide with International FOP
Awareness Day.
individual, fundraising initiatives towards the needs of the
child concerned and also to donate towards research. The
Hope For Jarvis Foundation donated $30,000 towards
research in the UK with FOP Friends. Tyson’s Fight-Life
with FOP has also undertaken to donate funds to IFOPA
as part of the money raised.
A number of our patients are now no longer able to travel
and so as IPC rep, I took the opportunity to visit our
only family living in Darwin in the Northern Territory,
at the top end of Australia. Erika and Nadine are twins
and together with their parents Bruno and Mavi, have
attended FOP Symposiums in the USA in the past as well
as our first patient gathering in Australia in 2006. It was
wonderful to meet up with them again and share some of
the exciting news that has happened here in Australia as
well as internationally.
We are also in the very early
stages of planning a patients
and physicians gathering
in Brisbane on June 3rd4th, 2016 to meet with
representatives of Clementia
as part of their FOP Patients
Narrative project.
Cody Wilson and Ollie Collins
meet during their Clementia
Natural History Study visit.
So all in all 2015 has been a
very exciting year for FOP
‘Down Under’!
Save the Dates!
Upcoming FOP Meetings
• FOP Italia Annual Meeting April 15-16, 2016 in
Tuscany, Italy
• FOP Friends 2016 UK FOP Family Gathering
May 20 - 22nd in Manchester, United Kingdom
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Focus on Fundraising
Awake for a Cure
By Amy Griffin
Last Spring, as
people began
finding out that
a child in the
Bethlehem
Middle School
had been
diagnosed with
FOP, it didn’t
take long before
her friends
Pumpkin Toss at Awake for a Cure Carnival
began asking
how they could help. Their school principal, wanting to not
only help this student but to give all the students a way to
contribute in a positive way, suggested a school fundraiser.
Spurred on by community parents, a plan began to take
shape. In consultation with students and parents, Principal
Michael Klugman landed on the idea of a lock-in at the
school. Sixth graders would be allowed to stay until 9 p.m.,
seventh graders until 11 p.m. and eighth graders would stay
all night. The event was given a name, “Awake for a Cure,”
and a date, October 9, and a planning committee quickly
formed in July.
The goal for the event would be to raise as much money
as possible for research into finding a cure. Sponsors were
approached for monetary and in-kind donations. The
IFOPA assisted with design of publicity materials and
registering all the students, who were encouraged, but
not required, to raise $25 each. While early on, it seemed
not many students were signing up, as the event got
closer, a few more children signed up each day, with many
bringing their donations and to the actual event. School
announcements, posters and IFOPA bracelets all helped
build excitement and spread the word.
to help with activities throughout the night. The evening
included events throughout the school: a carnival in one
gym, basketball in another, movies and a talent show in the
auditorium, a dj with dancing and live music from high
school performers in the cafeteria. Volunteers made baked
goods for a baked sale to raise additional funds. A local
pizza maker sold pizzas at cost and other snacks, including
breakfast, were free.
When the final tally was counted, “Awake for a Cure”
surpassed all expectations, raising over $35, 000 in honor
of Ashley Martucci, with more than 400 students and
over 200 volunteers working together. The overwhelming
response and generosity of the community was humbling
for all.
ZipperQ 4
by Amy Gordon
Amy and Zip Gordon
Photo courtesy of Tracey
Watkins Photography
This year we broke many records, including attendance
and BBQ teams, which just fascinates me. Year four of a
fundraiser is typically a lull year. Our volunteers worked as
hard as ever and the hard work paid off. The estimated total
raised will be over $100,000.
4,500 people attended ZipperQ 4 on October 3rd at
the Claremore Expo Center in Oklahoma. We had two
successful auctions raising funds from a silent auction
and live auction. 21 BBQ teams competed and tasting
kits were sold. Thank you to everyone who purchased the
2015 Vehicle Drawing – Winner’s Choice Tickets and
congratulations to the winner Mr. Travis Deter.
Two of our Australian families have undertaken separate,
Community sponsors, teachers and parents, eager to
contribute, began asking how they could help. High
school volunteers recruited over 100 high school students
6 www.ifopa.org
International Fibrodysplasia Ossificans Progressiva Association
International Fibrodysplasia Ossificans Progressiva Association
ZipperQ 4 has come and gone
and once again, our family is
humbled by our Claremore
community’s outpouring of
generosity. It takes an army of
volunteers to put on such an
event and when I think about, it
I get a little overwhelmed. So
many people from so many
places taking time to help raise
money for research for our boy
Zip and others who have FOP.
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FOP Connection
News for Members of the International FOP Association Clayton
University
Health Fair
Raises FOP
Awareness
Amanda McCuroly takes Jecinda Ellis
blood pressure.
During health and
wellness week at
Clayton Universtiy in
September, students
gave out information
about FOP and raised
$100 by giving health
screenings. Thank you
Chris Pitsikoulis for
organizing this event.
6th Annual Lincoln’s Legacy
Mud Run becomes Snow Run!
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Thank You Capital
Funding Group
The IFOPA received a $2,000
donation from Capital Funding
Group (CFG) to help build our new
website. This donation was given in
honor of our FOP member Joey Hollywood. We greatly
appreciate everyone who helped the IFOPA receive
these funds.
Current Fundraising Events
You are cordially invited to
Finding A Cure fundraising
event Wednesday, March 9th,
2016. Ritz Carlton New York,
Battery Park
6:00 pm - Cocktails and Silent
Auction.
7:00 pm - Dinner, Live Auction and Guest Speakers
All proceeds will benefit the International FOP Association
and the Center for Research in FOP & Related Disorders
at the University of Pennsylvania to help find a cure for
FOP.
Stay tuned for Sponsorship and Individual Ticket
information to be published on www.ifopa.org.
Bingo for A Cure!
Sunday, March 20, 2016
Allentown Fairgrounds, Agri-Plex Hall at 1:00 pm
Tickets: $30 in advance or $35 at the door
This year on November 21st one foot of snow fell in the
areas around Urbandale, Iowa preventing 12 of the 24
runners from traveling to the race. Snow and ice was so
heavy it cut the run from seven miles to five. Fortunately
the weather didn’t effect fundraising and the estimated total
will be about $20,000 for FOP Research. Thank you to
Lincoln’s Aunt Kristina Sligh for organizing this event!
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Proceeds go to Joshua’s Future Of Promises which benefits
the IFOPA in honor of Joshua Scoble.
Tickets can be purchased by sending a self-addressed
stamped envelope with your check payable to “Joshua’s
Future Of Promises!” to: Buss Paint and Wallpaper,
327 Main Street, Emmaus, PA 18049
Questions or to make reservations email Chrissy Flexer at
cflexer20@aol.com
International Fibrodysplasia Ossificans Progressiva Association
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Membership News
Renew Your IFOPA
Membership and Vote for
Board Members
Annual appeal letters to renew membership and vote for
new board members were mailed October 22nd. Annual
dues are $25 and you can renew your membership three
ways.
1) Go to
http://www.ifopa.org/member-center/join-ifopa.html
Choose your membership, complete the online form and
pay your dues with your credit card, debit card or PayPal
account.
2) Renew by Phone
Call our English speaking staff from 9 am to 5 pm EST,
Monday through Friday at 407-365-4194 to renew with
your credit or debit card.
3) Renew by Mail
Send a your completed remittance form and payment to:
International FOP Association
101 Sunnytown Road, Suite 208
Casselberry, FL 32707 USA
If missing remittance form mail your full name, home
address, email address, phone number and a check.
NOTE: If you have FOP and can’t afford the $25 annual
dues, please renew your membership by requesting a Free
FOP Sponsored Membership. Send an email to
victoria.mandracken@ifopa.org with your name, mailing
address and the name of your birth country or call Victoria
at 407-365-4194.
Please go to the website address provided in your annual
appeal letter to vote online before December 15th.
Thank you for renewing your membership and voting!
Membership Spotlight:
Board Member Gail Weakland
by Victoria Mandracken
After her grandson Justin
was diagnosed with FOP
by Dr. Kaplan in 2006,
Gail Weakland became a
member of the IFOPA. In
2009, her daughter Wendy
attended a weekend retreat
for FOP mothers hosted
by Amanda Cali. During
this retreat, Amanda
shared with the group the
need for a volunteer on the
IFOPA Board who had
Gail Weakland honored for siz years
financial accounting and
of service to the IFOPA
investing experience.
When Gail learned of the IFOPA’s need from her daughter,
she read everything she could about FOP, the IFOPA and
Jeannie Peeper. After several conversations with Amanda
and Don Brister about serving, Gail decided her CPA skills
would be helpful and joined the IFOPA Board as Treasurer.
Since 2010 she has also served on different IFOPA
committees including Executive, Finance, Audit and
Staffing.
As treasurer, Gail is responsible for the overall health
of the finances of the organization. Monitoring the
investments and providing governance for all monetary
matters, including the financial statements of the IFOPA.
She has worked alongside the external auditors to produce
unqualified financial statements and a timely filed IRS 990
form. Gail has been an integral part of the accounting
processes of the IFOPA office in her six years of service.
Her average of twenty volunteer hours per month have
enabled the Board to keep current with its fiduciary
responsibilities.
Gail shared that some of the challenges of serving on the
board are meetings and work sessions are mainly conducted
by conference call or electronically. Having reliable phone
service, email, and computer systems are necessary. She
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FOP Connection
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News for Members of the International FOP Association stated the perks of serving is you meet, serve and work with
some of the most caring, dedicated, and gifted individuals
you will ever have the privilege of meeting.
• Review annually the insurance policies.
Thank you Gail for six years of extraordinary service and
dedication to the IFOPA. Your skill and perseverance have
been instrumental in helping us reach many goals on our
journey to find a cure for FOP. Thank you!
• Review annually the Form 990 and the various state
registrations/reports.
Take Part In Our Mission:
Volunteer Treasurer Needed!
by Nancy Sando
The IFOPA is looking for a volunteer to join the Board of
Directors in January 2016 to serve as IFOPA Treasurer.
Qualifications include a CPA or training in accounting,
plus a commitment to FOP research and FOP families.
The Treasurer position requires about 20 hours per month.
Board member responsibilities include attending five,
2-hour phone meetings and one, 2-day in-person Board
meeting per year. Below is a complete list of responsibilities.
IFOPA Volunteer Treasurer Duties
• Review annually the medical insurance
reimbursement plan and implementation.
Serve as non-voting member of the Audit
Committee:
• Recommend an independent audit firm.
• Review the scope and plan for the independent audit.
• Review the Management Letter issued by the audit firm.
• Review the audit results and resolve any
disagreements.
Serve on Executive Committee:
• Attend six, 2 hour phone meetings per year.
If you or someone you know is qualified and interested
in serving as the IFOPA Treasurer, please contact Nancy
Sando by email nasando@chartermi.net or phone
(231) 347-1833
Thank you!
Serve as voting member of the Finance
Committee:
• Monitor the investment goals and criteria for the long
and short term investments.
• Monitor the fiscal responsibilities, internal controls
and financial affairs of the Association.
• Monitor the preparation of the annual audit.
• Oversee the budget preparation and implementation.
• Transfer funds between bank/investment accounts
and sign checks as needed.
• Review monthly bank/investment statements and
reconciliations.
• Review monthly credit card statements/charges.
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Friendly Reminders
Please be sure to update your contact information with the
IFOPA when it changes. We want you to receive all the
latest IFOPA news and FOP research communications.
Please contact a staff member by emailing us at
together@ifopa.org or calling our English speaking
staff at 407-365-4194.
Want a tool to raise
FOP Awareness?
FOP Member’s Updates
All FOP members in good standing with their membership
will receive a monthly email called FOP Member’s Updates.
This email will include member’s birthdays for the month,
names of new FOP members, condolences, and other news.
Please contact Victoria Mandracken by email
victoria.mandracken@ifopa.org if you are not receiving
your FOP Member Update monthly email or your
birthdate is missing or incorrect on these monthly
messages. Thank you!
Planning a Fundraising Event?
Please contact the IFOPA office for your fundraising
packet and help planning your event. Phone 407-365-4194
or email together@ifopa.org.
Do you have an article, poem,
photo or drawing to share?
Please contact the IFOPA office to receive FOP Awareness
Cards. Phone 407-365-4194 or email together@ifopa.org.
IFOPA Mission
Fund research to find a cure for FOP while
supporting individuals and their families through
education, public awareness and advocacy.
The next FOP Connection will be published March 2016.
Please email victoria.mandracken@ifopa.org or mail
Victoria Mandracken creative pieces you would like to
share with our FOP Community by February 1, 2016. The
C&PR committee looks forward to the opportunity of
reviewing your work for future publications.
International FOP Association
101 Sunnytown Road, Suite 208
Casselberry, FL 32707 USA
Phone: 407-365-4194 to talk with English speaking staff
Fax: 407-365-3213 Email: together@ifopa.org
• Review monthly and YTD financial statements,
including comparisons to budget.
Our Vision
A Cure for FOP
IFOPA Staff Direct Phone Extensions
Operations Manager: Denise Vietti 407-365-4194 ext. 3602
Accountant: Sue Weidner 407-365-4194 ext. 3603
Communication & Membership:
Victoria Mandracken 407-365-4194 ext. 3604
• Prepare monthly summarized financial statements
and comments for the Board.
10 www.ifopa.org
International Fibrodysplasia Ossificans Progressiva Association
International Fibrodysplasia Ossificans Progressiva Association
www.ifopa.org 11