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 request their contact information from the IFOPA office.



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 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.



Australia
Julie Collins
E-mail
My husband and I have three children.  My middle child, Oliver was born in 1993 and  diagnosed with FOP in 1995. My other son is William who is studying a double degree in engineering and commerce and my daughter Eleanor was born in 1996 and attends Secondary school. My husband Gerry is an accountant.  We live in New Farm, a suburb of Brisbane in the State of Queensland, Australia.

I work as an advisory visiting teacher in the field of physical impairment. I support students across mainstream settings at preschool, primary and secondary levels and in both public and private schools. Prior to this I have been a primary school teacher in New Zealand, England and Australia and I was a Deputy Principal in two Special schools. I also worked as an advisory teacher in autistic spectrum disorder and I worked as a policy officer in strategic planning and equity for the Department of Education. I have a Masters Degree in Educational Studies from the University of Queensland. My interests include book club, endurance trekking, bush walking, running and tennis. Our whole family enjoys going to the beach and swimming in the surf. Apart from my involvement on the IPC, my FOP related activities have involved supporting my son Oliver in some small scale fundraising, and awareness raising opportunities. I am proud to say that in 2010 “Ollie” received IFOPA’s first Outstanding Youth Award.



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 have 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 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.



Canada
Carrie Connell
E-mail
Canadian FOP Network
I live in London Ontario Canada and I am the Education and Program Coordinator at a regional Children's Rehabilitation Centre and Chief Steward and Vice President of my union executive. I take care of the logistics of the workshops and provide administrative support for our recreational programs for kids with disabilities. My daughter, Brooke (born in 2001) was diagnosed with FOP in March 2007. My husband and I also have a son, Hunter (born in 1997), and a black lab named Zephyr.  With the help of other FOP families, I founded the Canadian FOP Network and we hosted the first Canadian FOP Symposium and Family Meeting in 2009.  Along with about 70 FOP family members, we were pleased to have Dr’s Kaplan and Shore attending in addition to several others from the medical and scientific communities.  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.



France
Béatrice Bertrand
E-mail
I was diagnosed with FOP in 1983 when I was 16. I live with my parents on the French Riviera just half way from Saint Tropez and Cannes.  I joined the IFOPA in 1998.  Given my frustrating experience with getting a proper diagnosis and not being able to get medical questions answered, I wanted to make my contribution to the FOP cause.  My involvement consists mainly in translating documents to allow the French FOP community to have access to information about the disease and advances made in the research but also help spread the word of FOP throughout French-speaking countries of which there are about 50 in the world.



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 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.



India
Surinder Singh Oberoi
I became the IPC representative for India in 2010.   I work in communications for the International Committee of the Red Cross based in New Delhi.  My wife is Inpreet Kaur and we have two sons. My oldest son, Ivjyot Singh Oberoi born in 1994, is in the tenth standard. He does well in his studies and loves playing guitar and painting. My youngest son is Rabjyot Singh Oberoi, born in 2001 whose FOP was detected when he was two years old.  Rabjyot is  in fourth standard, is a good singer and plays key board with one hand. He is also learning Chess and loves to read. I am proud of my both sons.

Previously I was a journalist for both print and television and worked as Bureau Chief of Star News, Jammu and Kashmir, Special Correspondent for India Today magazine, and Bureau Chief for France Agence-Presse, the international news agency. I have published articles in nearly all the leading Indian and International newspapers and magazines. I have a Bachelor of Law (Academic) degree and a Master’s degree in Zoology and have had fellowships at the Bulletin of the Atomic Scientists, University of Chicago and Henry Stimson Centre, Washington DC. I am strongly committed to using my skills as a journalist and communicator to create greater awareness of FOP in India.



Italy
Enrico Cristoforetti
E-mail
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.



Malaysia
Juliana Louise
E-mail
 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.



The Netherlands
Irene Snijder
E-mail
FOP Stichting Nederland
I 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 hobby’s 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.



Poland
Thomas Przybysz
E-mail
I am 37 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 10 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 telephony systems).  I also like watching movies and taking long walks in my electric wheelchair.



Serbia
Jelena Milosevic
E-mail
I 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. From time to time I work as a freelance translator. In addition to this, I am the Vice-President of the Muscular Dystrophy Association of Belgrade and I write for a few disability magazines in the Balkan region. Through various campaigns and activities we mostly deal 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.



South Africa
Dr. Christiaan Scott
E-mail
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 I have been able to identify a further 5 patients, mostly young children. All but one of these patients are from Cape Town, so there is clearly still a lot of work to do in the rest of South Africa. 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.

Spain
Dr. Antonio Morales Piga
E-mail
I am a Spanish rheumatologist who after more than 20 years working for the Spanish National System of Health recently moved to the Institute for Research of Rare Diseases, at Madrid (Spain). My oldest son lives in Aachen (Germany) working as a Speech scientist, and my youngest one, just graduated in Computer engineering, currently is working for a technology company specialised in “Quantitative Risk Research”.

Since the beginning of my medical training I became interested on clinical research of metabolic bone diseases. As a consequence, I spent a year in Loma Linda VA hospital working with David Baylink who taught me the love for the work well done and the commitment to research.  At that time I was predominantly engaged on Paget’s bone disease, for whose intriguing causality and amazing clinical picture I felt deeply interested. This brought me the possibility of meeting Fred Kaplan at the first symposium of the Paget Foundation I could attend, in Oxford, at 1998. I will never forget the conversation we had while enjoying breakfast in such a wonderful place. His fascinating personality and exceptional mind discovered me a new world: FOP. Although I knew the disease since the early 80s (in fact I co-authored the publication of the first two cases reported in my country), after this encounter with Fred I learnt its true essence. A process at the same time wonderful and very sad. Wonderful because when I see any of the patients with FOP I can recognize courage, intelligence and desire to live. And very sad because all these good qualities collide with a harsh shell that oppresses them unfairly.

And that is why I am here: to make my small contribution for help changing this unfair situation.



Sweden
Marie Hallbert
E-mail
Svenska/Skandinaviska FOP-föreningen
I live in Eskilstuna, Sweden with my partner Pelle Fahlberg and our two children.  Our older son Kazper was born in 1994, and our younger son Hugo was born in 1998.  Hugo was diagnosed with FOP in January 2001 when he was 2 years, 4 months old.  From the beginning, I felt that educating people about FOP was extremely important.  One of the first things I did was set up the Swedish website for FOP to share pictures of Hugo before, after and during the flare ups, and also to share information in Swedish.  At that time no other information in Swedish was available.  I also contacted the media to draw attention to FOP, in hopes that children would avoid misdiagnosis and harmful treatment.  Thanks to newspapers, TV and the website, we grew from 4 to14 FOP members in Sweden in 6 years.  I went with my family to our first FOP gathering in Germany in 2001, where we met Dr Fred Kaplan and other FOP families. In 2004 I arranged the first Scandinavian FOP meeting in Sweden.  At the same time I founded the Swedish FOP organisation, and at our first meeting we decided to make it a Scandinavian organization to include members from Sweden, Denmark, Norway and Finland.  In 2005, I managed to get FOP information on the website for The National Board of Health and Welfare “Socialstyrelsen”, which is a government agency in Sweden under the Ministry of Health and Social Affairs.  In 2007 I was elected as IPC’s Ambassador for Sweden and attended the very first IPC meeting in Orlando, Florida.  In 2008 I did my first lecture about FOP to student nurses.   Also in 2008, I felt it was time to put all my energy toward working as an aide for Hugo and spreading information about FOP.  This led me to sell my part of the hairdressing salon that my grandfather started in 1934, where I had worked for 26 years.    I had a wonderful experience in 2009, when I travelled to New Jersey, USA and attended a retreat for mothers of children with FOP.  Part of that event was a tour of the FOP lab at the University of Pennsylvania, which made a big impression on me and inspired me very much.  Most recently, I’ve been working on translating the IFOPA’s medical binder into Swedish.   Apart from working on FOP, I recharge my energy by practising yoga and taking power walks in the forest.   I also do a bit of work as a model to get some contrast and balance to all the deep parts that come with FOP.   My biggest hope is to try to change the future a little bit and help all I can in the FOP community.



United Kingdom
Julie Hopwood
E-mail
FOPaction.co.uk
I live in Rochdale, a city in northern England near Manchester. My husband Steve and I have five adult children.  Our daughter Rachel, born in 1984, has FOP. Over the years we have put on many FOP fund raisers. In 2000 a multi-part television documentary was made about Rachel and our family called Living for the Moment. The documentary created a lot of awareness of FOP in the North West of England and helped people understand what FOP is, which made life much easier for us.  In 2002 I helped organize a symposium in Manchester for FOP; twenty three FOP families attended as did professors Jim Triffitt, Roger Smith, Fred Kaplan, and Eileen Shore.

I am a member of the UK fopaction committee and last year we set up a new FOP website for the UK. Our family have been members of the IFOPA for about 12 years and have been to two FOP symposia in the USA.  My aim is to keep on fundraising and keep Rachel in the media (TV, newspapers and magazines), an activity which she loves, as our way of increasing FOP awareness.  I also try to help other FOP families as much as I can.

~~~

IFOPA Board Members/IPC

Malcolm Munro
IPC Chairman
E-mail
I am president of the International President's Council and also Chairman of the IFOPA board of directors. I am grandfather of Miranda Friz of Vancouver Canada. Miranda was born in 2005 and diagnosed with FOP in 2007.  My wife Helen Munro and I live in Calgary Canada. We have three adult children, each with their own families, two of whom reside very close to our home, and a daughter who lives in Vancouver Canada (Miranda's mom). Before retiring in 2007, I was a professor at the University of Calgary business school. I taught information systems and have a PhD from the University of Minnesota, USA. Most of my FOP-related activities involve working on various projects with the IFOPA and with IPC. My goal is to expand IPC so that we have representatives from many more countries, and to encourage even more activity from my wonderful IPC "ambassador" friends.


Amanda Laue Cali
Traveling Resource Center and Medical Binder System
E-mail
I am currently serving on the IFOPA Board of Directors and have been involved with the organization for 15 years in various capacities.  I live in the state of New Jersey, USA with my two sons and husband.  My youngest son Ian has FOP and is attending the University of Delaware as a junior in the fall of 2010.  Prior to having children, I worked in the corporate world managing special projects for CEO's, ran focus groups, handled relocation projects, was a business owner and a fundraiser for a non-profit school.  I have worked for the last 16 years on a variety of projects for the IFOPA as well as the Ian Cali Fund, both supporters of the research lab in Philadelphia.  I have enjoyed my work with FOP families on projects like the 2000 & 2007 symposium, family workshops, Dr. Kaplan's medical clinics, helping the IFOPA to grow in both funding and membership services and hosting my own FOP mother's retreats.  In the last 5 years, my passion has been to help improve the communication among members across the globe through my work on developing the IPC, participating in international group meetings, getting international representation on the IFOPA's Board of Directors, encouraging translation and counseling those in other countries to come together and organize their own local support groups.  I am currently a working member of the IPC handling two special projects; the IFOPA's Traveling Resource Center and the medical binder system which helps members to manage their health care in an organized, easy to use, binder & tools.  I consider it a privilege to be on this international team of people that is working to make life "easier and better" for those that live with FOP daily.