International President's Council

The International FOP Association (IFOPA) has over 500 members in 60 countries on six continents. The IFOPA’s International President's Council (IPC) is a communication network of volunteers throughout the world. IPC members are committed to helping the FOP community in their country or region by keeping FOP families informed about FOP treatments, research, and by providing family support.  FOP volunteers establish local FOP associations, establish their own "country" websites, create local FOP family networks, and raise funds for FOP research. IPC members also work to create greater awareness of FOP in their medical community and the public generally.

As the International President's Council is an effort to bring together the entire world FOP community, the IFOPA is eager to expand its network of IPC members to countries that are not currently represented. If your country does not have an IPC representative, and you would be interested in volunteering for this activity, please contact the IFOPA office for more information or ask about how you may become a member of the International President's Council. All current IPC members are listed below in alphabetical order by their country. If you wish to make contact with any IPC member, you may click on their E-mail link or request their contact information from the IFOPA office.


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Argentina
Moira Liljesthrom

 E-mail

Fundación FOP
I am president of Fundación FOP in Argentina.  I live with my husband and our two children in Buenos Aires. My smallest child was diagnosed with FOP in 2001 when he was 4 years old.  I Moira2 am an architect and have a master's degree in Urban and Regional Planning. I have worked as a researcher since 1990 and as a professor at the Universidad de Buenos Aires since 1995. Since my son was diagnosed, my husband and I began to work for the FOP cause in our country, trying to spread the word among the community and health professionals to get FOP better known and contribute to the diagnostic process.  Since 2007 I have been ambassador of the IPC for Argentina. My goal is that FOP will be much better known and that in my country we can have an expert team of health professionals to help people affected.


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Australia
Brooke Scott
Brooke Scott F1010007
FOP Australia
I was diagnosed with a variant of FOP at the age of 29, after many years of misdiagnoses and procedures. I have been a member of IFOPA since 2010. I am currently 36 and live in Adelaide, Australia. I work 4 days a week for a utilities company as the Maintenance Coordinator after graduating from University with a Bachelor of Business Administration. My husband Brendan is a Geotechnical Engineer and we live with our dog Gracie and cat Penny. Being diagnosed with a rare disease in my late twenties has been a tough road, after many years of not having a diagnosis, it was good to be able to name my condition but there was a fear of the unknown that came with being diagnosed with FOP. FOP Australia was formed in 2015, our aims are to support the FOP Australia community and to contribute in any way we can towards finding a cure.



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Brazil
Dr. Patricia Delai

E-mail

FOPBrasil
I have been involved with the IFOPA since 1999 when I first encountered a patient whom I discovered had FOP. I have a full-time medical practice as a dermatologist but I also now Patricia_Delaihave several FOP patients. I was the first chairperson of the International President's Council when it was set up in 2007. I am president of the Brazilian FOP Association (Fopbrasil) which has 76 members and the IFOPA's Latin American medical advisor on FOP. I translate IFOPA's medical documents into Portuguese for the Brazilian FOP community. Over the years, I have contacted many Brazilian hospitals and medical schools to inform them regarding FOP. I have also worked with TV and radio stations as well as popular magazines and newspapers to create greater FOP awareness.  These efforts contributed to locating a multigenerational FOP family from Brazil, an important step in the eventual identification of the FOP gene in 2006. I was very pleased and proud to be given the first Outstanding International Leadership award by the IFOPA in 2010. I live in Sao Paulo with my husband and two sons.


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Canada
Carrie Connell

E-mail

Canadian FOP NetworkCarrieConnell2
I live in London, Ontario, Canada with my husband, Cameron, my daughter, Brooke (born 2000 & diagnosed with FOP in 2006), my son, Hunter (born 1996), and our black lab, Zephyr. I am the Education & Program Coordinator at TVCC, a Children’s Rehabilitation Centre, where I support the logistics of the educational workshops and recreational programs for kids with special needs. I am also my Union’s Vice President, Founder & President of the Canadian FOP Network and Canadian Ambassador on the IFOPA International President's Council. Together with our Board and other Canadian FOP families, we work to raise awareness through the CFOPN website, conferences and social media. We fundraise for research, donating annually to the FOP Lab at the University of Pennsylvania via the Ian Cali Foundation. As with other FOP families we look to the FOP community for inspiration and hope and work to support efforts to find a cure for Brooke and the other children/youth/adults with FOP. 

 

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P.R. China
Dr. Keqin Zhang

E-mail

IDr Zhang 72 dpi am Dr. Keqin Zhang, a clinical endocrinologist working as the director of Department of Endocrinology, Shanghai Tongji Hospital Affiliated with Tongji University. I have been working in the field of Endocrinology since 1984. In February of 2008, I met my 1st FOP patient, and I was surprised by the bitter life of this patient. I decided to do research on FOP. Since then I have collected more than 70 FOP patients in China by the help of TV, newspaper and internet.

My patients always eagerly ask me when an effective new drug would be produced. I think the FOP community including clinical doctors, basic researchers, the pharmaceutical companies, governments and social workers etc. should accelerate the work process for FOP.

 

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France
Antoine Lagoutte

E-mail

FOP France

Antoine LAGOUTTE IPC image for web siteI live in Morlaix with my wife and our three children. My eldest son, Alexander, was born the 23rd of April 2010. He was diagnosed with FOP in his first year after a flare-up occurred in his thigh due to a vaccine injection.

I am an officer in the French Gendarmerie (a military police force). My hobbies are: reading, running, fencing, history and the sciences. In 2012, I created FOP France with my wife in order to federate FOP patients, and sensitize the French population and our government to the FOP disease while increasing support for medical research. Nowadays, FOP France continues to grow with the International FOP Association (IFOPA) and we work with other FOP groups in Europe. FOP France is working closely with the British FOP organization - FOPFriends. Together, we have formed an efficient partnership with the Oxford University.

I've been very pleased to accept the IFOPA's responsibilities of becoming an IPC member for France and all French speaking countries since March 2013. As our FOP France motto says: "Each step is a huge leap!"




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Germany
Roger zum Felde
E-mail

FOP-e.V.

I was born in 1965 and live in Bad Fallingbostel in the north of Germany.  I have FOP and I do my best to create greater public awareness of my condition by doing as many media and public appearances as I can. Since retiring from Bayer in 2002 (where I worked for more than Roger_zum_Felde2 20 years as an industrial specialized landlord), I became the CEO of FOP Germany.  Through the publicity created, we now know 33 persons with FOP in Germany.  In many Interviews with both TV and the press in which I talked about FOP and how I deal with it, I was able to raise awareness of FOP. I have also had interviews and media exposure on radio and through various presentations at service clubs such as Rotary and Mercedes-Benz Auto. I helped produce a YouTube video in which I demonstrated the difficulty of navigating a public park in a wheelchair. One of my special moments in these media activities occurred when I met Eva Louise Kohler, spouse of Germany's former president Horst Koehler. I also try to provide assistance by translating IFOPA information into German for posting on our FOP Germany website.


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India 

We are looking for an IPC representataive.  Please let us know if you are interested by emailing together@ifopa.org with the subject "India IPC"
 


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Italy
Enrico Cristoforetti

E-mail

FOP Italia

enricocristoforetti2 I'm president of FOP Italia founded in 2006. I am father of Elisa, born in 1999 who was diagnosed with FOP in 2003 when she was little more than four years old. I live in Avio Italy with my wife Alessandra (Secretary FOP Italia) and our youngest daughter Milena, born in 2004. My profession is banking. I am also responsible for the association of patients Orphanet: portal for rare diseases and orphan drugs. My niece Eleanor Borghesani is the contact person and translates e-mail and other messages into Italian for me. In April 2010 FOP Italia was proud to host a conference on FOP in Verbania Italy attended by Dr. Eileen Shore, Co-Director of the FOP Laboratory at the University of Pennsylvania and other scientists in Italy active in FOP research. We are organizing for the Fifth Congress FOP to be held in Rome in April 2011.

Massimo Alfieri
Email

Massimo Alfieri IPC 2014Massimo Alfieri is Vice-President of FOP Italia. He joined the Italian Association in 2009, after his young daughter Isabella was diagnosed with FOP. Age 54, Massimo has a degree in Electrical Engineering and is now active in the design and manufacturing of production equipment for the pharmaceutical industry. From the beginning of his activity in FOP Italia, Massimo contributed to improve and strengthen the relationship of the Association with the other worldwide FOP organizations, many researchers and clinicians who are focused on FOP. Thanks to his efforts, the annual FOP Italia conference attendance has steadily increased the number of FOP researchers and people with FOP who attend from the many countries outside of Italy. With the precious help of his wife Simona, member of FOP Italia Board, Massimo is constantly active in expanding FOP awareness in Italy and raising funds for FOP research to find a cure for FOP. These funds are given to a FOP research group in Genova and also to the US Research Centre in Philadelphia.

 



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Malaysia
Juliana Louise

E-mail
JulianaLouise3 I live in Ipoh, west Malaysia. I was born in 1981 and diagnosed with FOP when I was six years old. I'm a single mother with a son who is 9 years old (born in 2001) and does not have FOP. We live with my mother but I also have two older married sisters who live elsewhere. I am a Social and Community Development Assistant in an NGO for people with disabilities here in Malaysia. We implement the Community Based Rehabilitation approach and I'm also the only disabled staff working there. We are the only organization that deals with vehicle modification for people with disabilities. Occasionally we hold other clinics that focus on rehabilitation, orthopedics and even podiatry which is relatively new in Malaysia.  As part of my job, I'm lucky to have met many children and adults with disabilities and people who care for those with disabilities. There are many times I cross my fingers and thank God how lucky I am even with FOP. I stand for more than 10 hours a day as I'm unable to sit without assistance which means I also work standing. There are quite a number of practicum students I have met and exchanged information with here from Canada and Norway, and a few local ones.  My interests are reading, completing jigsaw puzzles and being online. I am extremely happy to be an IPC representative and I will try to be of any assistance I can to my FOP community.


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The Netherlands
Irene Snijder

E-mail

FOP Stichting Nederland
Irene_Snijder2I became an IPC member for the Netherlands in 2009. I live in Amsterdam with my only child, a daughter born in 1991.  My daughter’s FOP was diagnosed in her ninth year as a result of a fall on stairs.  She graduated from high school Gymnasium (pre-university secondary education) in 2009.  I have worked in a library and on an accounts receivable department of a homecare organization. My hobbies are: reading, watching documentaries, art, history and politics.  In 2004 I started the Dutch FOP Foundation to inform people about FOP in the Netherlands and connect Dutch FOP patients so they can share information. Nowadays the Dutch FOP Foundation works with multiple organizations and participates in various projects to create, for example, bio- and data banks.


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Poland
Thomas Przybysz

E-mail

www.fop-poland.pl
Tom_Przybysz2I am 43 years old (born in 1973), I have FOP, and I live in the small town of Zabno in west-central Poland. I have been a member of the IFOPA since 2000. I am the founder of the Polish mailing list "Foplista”, which currently brings together 22 patients with FOP. I also work with our FOP website which greatly assists members of our FOP community by providing information about FOP in Polish. I currently work as an amateur website designer. I am passionate about science and technology (particularly computers and mobile telephone systems). I also like watching movies and taking long walks in my electric wheelchair.

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Poland
Katarzyna Ziaja (Kasia)
Email

fotoI am an anesthesiology nurse from Stary Sacz (a beautiful small town in south Poland). I work in The Ministry of the Interior’s Hospital in Cracow, Poland in the Anesthesiology and Intensive Care Ward. The first person I met with FOP was Tomasz Przybysz in 2011. After meeting him, I wrote a few articles about FOP on my blog about rare diseases:http://chorobyrzadkie.blogspot.com/search/label/FOP
I have been an IFOPA member since 2012. My interest in FOP and other rare diseases led me to write my Master Thesis about somatic, mental and social functioning of FOP patients in Poland and the daily burden of care their families carry. I am in contact with most of the FOP patients from Poland and I am cooperating with Tomasz Przybysz in all IFOPA efforts to provide education, awareness and advocacy services to members in Poland.

 

 

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RussiaIPC- Vladislav Grachev
Vladislav Grachev
Email

http://foprussia.ru
My 7-year-old son Alexey was diagnosed with FOP. Several volunteers and I created Foprussia community in 2009. In 2013 IPC Mikhail Belyaev created website http://foprussia.ru/ to support Russian FOP-patients. We have held 2 international FOP conferences, and we are establishing collaboration with the Ministry of Health and with doctors from Moscow, St.Petersburg and Kyev (Ukraine). We have provided DNA diagnosis of FOP and POH all over Russia and in Ukraine (only in Kyev and Kharkov). We are supporting POH-patients in Russia and Ukraine (5 people). Our FOP community consists of about 60 patients. We are ready to support any clinical trials of FOP treatment in Russia. We have been translating guidebooks and their updates for doctors and families. We have accounts on facebook and Russian social networks. Also, we provide publications for Russian press. We produce tutorial films on FOP. In addition to this, we plan to launch several more online informational projects on FOP besides the main website.

 

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Russia
Mikhail Belyaev
Email

misha5I live in St.Petersburg, Russia. My son Artyom has FOP. We discovered this in 2012 and that was the start of my way in Russian FOP-community. I've made a simple website and we began to search for people like us. I coordinate our work in NW region of Russia: collaborate with the main orthopedic institute in Russia, getting the information about children with FOP, communicate with doctors, patients and Mass Media.



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Serbia
Jelena Milosevic

E-mail
Jelena MilosevicI was diagnosed with FOP in 1988 at the age of 9 and at that time I was the only person with this condition in my country. I have been a proud member of IFOPA since 1992. I live in Belgrade, the capital of Serbia, where I graduated from the University of Belgrade (Philological Faculty, English Department) in 2002 and earned my Master's degree in 2014. From time to time I work as a freelance translator. In addition to this, I have a blog on disability issues and rare diseases and I write for a few disability magazines in the Balkan region. As a disability rights activist, I have participated in various campaigns and activities dealing with general issues such as disability legislation, inclusive education, employment, accessibility, transportation etc. as part of which I always find a way to talk about FOP and numerous challenges we face every day. I am one of the founders of the National Organization for Rare Diseases, Serbia.


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South Africa
Dr. Christiaan Scott

E-mail
Chris_Scott_cropped I am a Pediatric Rheumatologist from Cape Town, South Africa. I work in the Red Cross War Memorial Children's Hospital. I first diagnosed a beautiful little girl with FOP in 2009. The disease was completely new to me and it has been an unsettling journey of discovery. Unfortunately for this young girl the diagnosis was delayed and she had biopsies at 4 different sites before she came to my attention. I was very saddened by this course of events as these biopsies resulted in additional tissue injury which should have been avoided. It became clear to me that the best way for me to help would be by creating awareness around FOP to prevent this from happening to patients in the future.

I made contact with colleagues in the Genetics department and discovered that Professor Peter Beighton had diagnosed six children with FOP in 1982. We managed to track down two of these patients, who had developed severe disability and complications. Through presentations and papers aimed at orthopaedic surgeons, rheumatologists, paediatricians and radiologists we have been able to identify a further 8 patients, mostly young children. All but 2 of these patients are from Cape Town, so there is clearly still a lot of work to do in the rest of South Africa. A small number of patients from other African countries have been diagnosed but much fewer than we would expect so we are concerned that most of the children in Africa with FOP are undiagnosed. There is an urgent need for these patients to get connected to the broader FOP community. I am passionate about child health advocacy and about the plight of children in the developing world with rheumatic and musculoskeletal diseases, as these diseases have been neglected historically.

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South Africa
Joseph Fredericks
Email

IPC Joseph FredericksI reside in Cape Town, South Africa with my wife, Freda, and our youngest child, Damian. Our older son, Leighton, lives in Atlanta, Georgia, USA and our only daughter, Nicole, lives in Durban, on the east coast of South Africa. I am a businessman providing services in home design and improvements and I am the Chairperson of the South African FOP Association. We learnt about FOP when Damian was diagnosed in June 2010, after ten months of continuous search. A medical practitioner suggested that it may be FOP and I searched the internet for more information. I found the IFOPA website from where I learnt all the symptoms of FOP and could subsequently confirm the correct diagnosis. We also learnt everything we needed to care for our son from the IFOPA website and I gained good insight on how to manage the condition, how to create a safer environment and how to provide the best care whilst allowing him to enjoy his life as a ten year old boy. I realised that none of the medical practitioners whom we consulted in Durban, where we lived at that time, had any knowledge of FOP. The IFOPA sent our information to Dr Christiaan Scott who contacted us and that was the first time I felt confident that someone in South Africa has a good knowledge of FOP. In 2011 we relocated to Cape Town, met with Dr Scott and together we have established the South African FOP Association through which we are determined to provide support for other FOP families and to create awareness of FOP especially in the medical field. Currently, we are aware of nine patients in our country but we are convinced that there could be more than double that amount. It is also our goal to create awareness of FOP in our neighbouring states as well as the rest of the African continent. I had the privilege to visit the IFOPA in Florida during May 2012, where I met Jeannie Peeper, IFOPA President, who inspired me to do more for the FOP community in South Africa.

 

 

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Spain
Patricia Marin
Email

Patricia Marin 2013 IPC member Spain do not replaceAEFOP-Asociación Española de Fibrodisplasia Osificante Progresiva

My name is Patricia. I’m 38 years old and I live in Valencia, Spain. I was born with bunions (deformity of the big toe). Both were put into plaster. Some thought the toes could be corrected because of my young age. Then in 1979, at the age of two years, I was diagnosed with myositis ossificans progressiva at La Fe Hospital, where I was born. Currently, monitoring of my disease is done at the Hospital General Universitario de Valencia.

I went to school and cherish the great memories I have of teachers and peers. I went up to the Graduate School (GBS). I did not want to continue with higher education but I did continue to study English, and Computer Science. Years later, I changed these classes to include pottery workshops, which helped me develop my creativity, and I loved it. My hobbies are varied: reading, ceramics, Internet, music . . .  and whenever I can, travel to see my friends who live far away. My goal has always been to live intensely today, tomorrow is the future and it is uncertain.

In 2008 J. Luis Plaza Lopez contacted me, my family and many FOP families in Spain. Despite not having FOP himself, nor anyone in his family, he proposed we found the Association (AEFOP), of which he is President. From the first moment our association started Mr. Plaza has dedicated a lot of work, time, and experience in the Associations to AEFOP. Currently, I hold the position of Secretary for the AEFOP. But for me, the most important thing is to help others with my experience. AEFOP has allowed us to learn about more people who are affected by FOP, hitherto anonymous, and they have contacted us for specific queries or questions. Some people with FOP contacted us to simply not feel alone while facing the unknown. In some cases, FOP is still unknown, even by doctors, and surgeries have become one of the worst enemies of the disease. I always think I’m very fortunate, because I was diagnosed early, and suffered no medical experiments. To have a family like mine, is also proof that I’m very lucky. They are always providing support and recharging my strength.

I never hid anything about my disease from others. I learned to live with it, and lead a life as normal as possible according to the constraints of FOP. And I am happy to help others with my experience. Now, I just want to keep my strength so I can keep fighting FOP until researchers find a cure or a way to slow the process of the disease. And if I had only one message to send, it would be - Having FOP does not mean giving up the wonder of life, only I live in a different way.




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Sweden
Marie Hallbert Fahlberg
E-mail

Svenska/Skandinaviska FOP-föreningen
Marie_Hallbert2Eskilstuna, Sweden.
Mother of a son born 1998 diagnosed with FOP in 2001.
Member of IFOPA since 2001.
IPC representative sine 2007.
Founder and President of Svenska/Skandinaviska FOP Föreningen since 2004.
Owner and operator of website www.fopsverige.se.
FaceBook page www.facebook.com/fopsverige.

Arranged and hosted several Scandinavian FOP seminars in Sweden with clinics together with Dr. Kaplan, Dr. Pignolo and Dr. Shore. Creating networks around the patients. Charity work as a FOP Coordinator in Scandinavia. Helping the families, doctors and specialists find each other and guide them on where to start and where to find the important FOP information. Create networks in health care for FOP people around the globe. Raise awareness through social media and media.

Collaborates in Sweden with:
The Rare Disease organization in Sweden www.sallsyntadiagnoser.se
The Swedish National Agency for Rare Diseases www.nfsd.se
Taggisar, a company that makes In Case of Emergency stickers for FOP both in English and Swedish www.taggisar.se


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United Kingdom
Chris Bedford-Gay

IPC Chairman
E-mail
Chris-2010c

In 2009 my son recently had neurosurgery for “mysterious lumps on his head”, it wasn’t cancer but they didn’t know what is was, and we had just celebrated his 1st birthday, when a call came from the neurosurgeon. The tale of Oliver with his turned-in-toes had made its way to a panel of experts and one had connected the dots. FOP had entered our world and life changed. I soon joined the IFOPA and my role grew to working in multiple committees including more recently chairing the International President’s Council, a role that helps bring together FOP leaders from around the world. In 2012, I founded the UK charity FOP Friends and became chair of the UK’s FOP patient group. I look forward to the day I put-my-feet-up in the evening, remind Oliver to take is medicine and relax while he plays with his two younger brothers, Leo and Harry. That day is not today, so until then, I will do all I can internationally to support the search to find a cure for FOP. Please contact me if you want to learn more about our global IFOPA family.

 

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United States of America

Marilyn Hair
E-mail

Marilyn Hair USA IPCI am honored to represent the United States on the International President’s Council.

My first child, Sarah Steele, was diagnosed with FOP in 1985 when she was 4 months old. My family was alone with FOP until 1991 when we learned about the IFOPA. We have been active members ever since.

I have had many responsibilities in the IFOPA, including Chair of the Board of Directors in 2014 and 2015. Sarah and I wrote the FOP children’s book, What is FOP? Questions & Answers for the Children, and I helped to start the IFOPA LIFE Committee, Living Independently with Full Equality, that provides a LIFE Award scholarship to IFOPA members who have FOP.

I work at the University of Washington in Seattle in an environmental health research center funded by the US National Institutes of Health. Before I returned to school to study biology and public health, I was a United Methodist minister.

Sarah has a younger brother and sister who have grown up and moved away from home. I live with my husband, Richard Steele, and Sarah in Redmond, Washington.

My goals are treatments for FOP and a better life for those who live with FOP in every part of the world. For this to happen, the FOP community worldwide needs to help FOP researchers and pharmaceuticals by sharing their stories in the FOP Registry and by participating in clinical trials to test potential treatments. My task is to help explain the ways FOP community members can help.

I look forward to the day when:
• FOP is diagnosed quickly and accurately
• Every FOP patient receives good medical care
• Those with FOP connect with others through their national FOP organization and the IFOPA, and
• Everyone has access to the drug treatments we all hope will be developed and available soon.


 

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