International Federation of Marfan Syndrome Organizations (IFMSO) E-Newsletter
(Vol 5, Number 1, February, 2010)

Contents:
President's Report
Slovakian Association
8th International Research Symposium on the Marfan Syndrome
TGF Beta - what does it mean?
Report of the 2009 EMSN Meeting
Upcoming Meetings & Events
VI ICORD - Rare Disease Day 2010
Associazione Stefano - Bambini e Marfan
SIMA 10th Anniversary
European Marfan Support Network (EMSN) Meeting
American Society For Matrix biology (ASMB) Meeting
E-Mail Correspondence:
Japan
Ukraine, India and Thailand
Netherlands/Dutch
Philippines

President's Report:

It is now 2010. Ten years into the 21st century! For someone like me, born into the early 20th century, it seems rather surreal. I never was one to get "into" reading science fiction, but of course, we are living in a "sort of science fiction" world of medical research, although it is not fiction. I was reviewing the immense strides in Marfan research over the past 100 years, and we can see that the past 25 years have been the most impressive - uncovering a depth of understanding of cells, structural and regulatory, unknown before It is a world beyond one visible to the eye, and out of our obvious control. We used to say, "we are what we eat," and now we have to add that we are what our genes are. Well, that will probably change too. Perhaps it will be we are what we are "programmed to be."

One of the most important MFS events in the coming year will be the 8th International Research Symposium on the Marfan Syndrome," to be held in September 11 - 14, 2010. It has been 5 years since the meeting in Ghent, Belgium, when the last Marfan (MFS) meeting was held with a gathering of some 300 people. It was also the last "in person" meeting of the International Federation of Marfan Syndrome Organizations - or IFMSO. Both of these meetings have been important in the world of MFS. The research symposium since initiated the early interest and collaboration between scientists and the different MFS disciplines' research underway, and also since it occasioned the collaboration and exchange of information between MFS organizational membership throughout the world. Read about the upcoming symposium plans below.

How many people are there throughout the world with MFS? How many have benefited from the public awareness campaigns? How many have benefited through the exchanges between the physicians and the "aware" patients and their families? How many lives have been saved with the greater understanding of diagnosis, and treatment, surgery and drug therapy? We could probably measure this over the past 20 years since the First International Symposium on the Marfan Syndrome was held in Baltimore, Maryland, under the leadership of Dr. Reed Pyeritz in 1989. Many of us today remember this meeting, with Dr. Victor McKusick as one of the primary speakers. I always equate those early researchers with the pioneers in the United States, who had traveled in the covered wagons - perhaps we are now in Ohio vis-à-vis research. Such a long distance to travel and yet so much more to learn and from which to benefit.

The dates and sites of previous symposia are on the IFSMO web site, (still to be updated - everything takes time), but these International meetings represent the amazing strides made in research over the past 20 years. Which makes us all eager to learn of recent findings, results of the on-going Losartan clinical trial, and impact of the TGS beta research….much to hear about, understand, and learn.

Well, this is all exciting, but the hard work goes on. The heavy lifting regarding education and spreading the word of current therapies and research is in the hands of the various countries' organizations. It is the MFS organization in each country - in their own languages, and with their own system of health care, which will ultimately determine how MFS health care improves on a local level. How effective are the MFS organizations as they meet, send out information, urge their membership to keep up to date and share their information, improve diagnoses, new therapies, and surgical options for the time and person. So much to do, and all of you are doing this - now. Thank you. How wonderful it is that your keep promoting MFS information and publicizing the research advances. Keep up the good work, and recognize how important you are to those in the world of genetic disorders.

This issue will focus on the Slovakian Marfan organization - or Asociacia Marfan syndromu (AMS) . This group was formed in 2009 and is a member of the European Marfan Support Network (EMSN). They have accomplished a great deal in a short period of time as you can read from the interesting article contributed by Alzbeta Lukovicova, AMS Vice President - congratulations to the AMS - and we love the pictures!

Asociacia marfan syndromu (AMS) - the Slovak Marfan Association
Working to inform, share information, and support individuals and families with
the Marfan Syndrome.

Meeting of the members of the Association.

The Slovak Marfan Association continued in previous activities informing the public about Marfan syndrome and how our association can help the patients. Several articles were published in the media such as popular journals, newspapers, TV programs, and in other media channels. This has helped to spread information about our association and activities and further increased the number of our members.
As the social health care system established by law in Slovakia doesn't include the diagnosis Marfan syndrome amongst the diseases needing special care, and consequently Marfan patients aren't considered to be disabled, the main aim of our activities was again focused on our patients by helping individuals to get into contact with special medical doctors and to arrange the appointments for their medical examinations. The association has helped many patients in receiving regular benefit payments. For patients who needed help, we provide a recommendation to different authorities for obtaining disablement cards, early retirement benefit, social and financial supports. Unfortunately, the Association has no support from the government and is struggling to get external funding to be able to provide more support to our members. Thanks to domestic and foreign financial support our association can maintain the existence and all activities.
The "Marfan Care Centre" continued their work providing important genetic consultations and recommendations for our patients, as well as for those who are not yet diagnosed.
From 16 to 18 October 2009 we organized a meeting of the members of the Association in the recreational centre of the spa town Piestany. The main focus of the meeting was on rehabilitation, swimming, massages, wraps, etc. Relaxation activities were associated with professional advice and lectures in cardiology, orthopedics, and genetics. The meeting was also invaluable in terms of social activities, providing opportunities for our members to get to know each other, to share problems, exchange experience and build personal friendships. This was particularly successful among young members.
Alzbeta Luykovicova, AMS Vice President: Web Site; http://marfan.szm.sk/

Pleasant evening during meeting of the Slovak members.

Save the date!

8th International Symposium on
Marfan Syndrome

September 11-14, 2010

Airlie Center
Warrenton, VA 20167
www.airlie.com
Nearby Airports:
Reagan National and Dulles International, Washington DC

Program Highlights:
New Diagnostic Criteria for Marfan Syndrome
Overview of Clinical Trials Worldwide
Mechanisms of Aneurysm Syndromes
Therapies of Marfan Syndrome
Treatment Approaches to Genetic Aneurysms

PROGRAM Committee:

Peter Byers, MD, University of Washington, Seattle, WA, USA, Co-Chair
Hal Dietz, MD, Johns Hopkins University, Baltimore, MD, USA, Co-Chair
Bart Loeys, MD, Ph.D., Ghent University, Belgium, Co-Chair
Catherine Boileau, Ph.D., Hôpital Necker-Enfants Malades, Paris, France
Duke Cameron, MD, Johns Hopkins University, Baltimore, MD, USA
Anne De Paepe, MD, Ph.D. Ghent University, Belgium
Guillaume Jondeau, MD, Hôpital Bichat, Paris, France
Dianna Milewicz, MD, Ph.D., University of Texas, Houston, TX, USA
Lynn Sakai, Ph.D., Shriners Hospital for Children, Portland, OR, USA

Please pass this information on to other colleagues at your institution

The International Symposiums on Marfan Syndrome have provided a common meeting ground for basic scientists, applied scientists, and clinicians to better understand the molecular etiology of the Marfan syndrome, the biochemical abnormalities produced by the underlying mutations in connective tissue genes, the clinical consequences of these mutations, the medical and surgical management and the effects of these interventions on natural history. These meetings have been held with several year intervals to permit sufficient progress to warrant assessment of the impact of the advances. The last international symposium was held in September, 2005 in Ghent, Belgium.

The symposium brings together a panel of the world's experts for constructive discussions and vibrates debate on the current state of the art research and clinical therapies for Marfan syndrome covering all major disciplines including, cardiology, surgery, orthopedics, genetics and ophthalmology. An exciting 2.5 day program is being planned. Leaders from international volunteer health organizations are invited to attend.

TGF Beta and Marfan - what does it mean?

So much has been happening concerning TGF Beta and Marfan syndrome - "just what is TGF beta?" and "What does TGF beta stand for?" Well, below you will get an idea of the amazing research being done in the field of "transforming growth factor-beta" otherwise known as TGF beta. Read on….(Editor):

Recently, our understanding of the molecular basis of Marfan syndrome (MFS) has increased dramatically, resulting in new therapeutic approaches with significant potential to inhibit changes associated with MFS. Central to this new view was the discovery that the protein, transforming growth factor-beta (TGF-ß), is a crucial effector in MFS. TGF-ß was originally found in the fluid used to grow certain tumor cells. TGF-ß was found to induce a tumor-like morphology and promote the growth of some cells, hence the name transforming growth factor. However, now we realize that TGF-ß is primarily an inhibitor of cell growth, a key modulator of the immune system, is involved in blood vessel maturation, and is a potent stimulator of the synthesis of the extracellular matrix molecules. (Matrix is the material that surrounds cells and to which cells adhere.) A protein with as many activities as TGF-ß must be controlled after release from cells, so that it does not act inappropriately. One way TGF-ß is regulated is that it is released in a latent form and is converted to the active growth factor only when and where it is needed. TGF-ß is maintained in an inactive state by association with a second protein aptly named the latency associated protein. Interaction with the latency associated protein blocks TGF-ß from binding to its cell surface receptor and transmitting a signal into the cell nucleus. The latent complex of TGF-ß contains a third protein - the latent TGF-ß binding protein or LTBP. The role of LTBP is to direct the latent TGF-ß into the matrix. Research on the relationship of TGF-ß and MFS was stimulated when it became apparent that LTBPs have a similar structure to fibrillin-1, the protein defective in MFS and a component of the matrix, and that the two proteins bind to each other. Therefore, TGF-ß, which has profound effects on matrix, is bound indirectly via LTBP to the protein that is abnormal in MFS. This suggested that there might be a causal relationship between the defective matrix in MFS and improper TGF-ß action.

A crucial experiment was performed in which TGF-ß activity was blocked in mice with mutant fibrillin-1. The outcome was that mice in which TGF-ß activity was blocked did not develop the tissue changes emblematic of MFS. This result was interpreted to indicate that when the fibrillin-1 was abnormal, the interaction of the latent TGF-ß was impaired and the TGF-ß that should remain latent was activated. Active TGF-ß induced the tissue abnormalities associated with MFS; blocking the action of TGF-ß prevented the expected tissue defects.

This idea was a game-changer, because now the abnormalities in MFS could be considered as changes resulting from inappropriate TGF-ß cell signaling rather than emanating from a faulty matrix caused by defective fibrillin-1. Physicians know how to develop therapies for conditions of abnormal signaling, and many of the drugs used various conditions interfere with cell signaling. A drug was quickly identified that lowered the TGF-ß levels, and this drug, losartan, was tested in MFS mice. The startling result was that, as with treatment of MFS animals with TGF-ß inhibiting antibodies, animals given losartan had tissues that were close to normal. Fortunately, losartan is approved for use in children, and small trials with this drug were quickly started. The early results were positive, prompting the NIH to initiate a large trial. This and similar trials in several other countries will soon reveal the clinical utility of this treatment.

The identification of the role of TGF-ß in MFS has had a number of positive spin-offs. Several other conditions with arterial aneurysms have now been shown to display enhanced TGF-ß signaling, indicating that increased growth factor signaling in vascular abnormalities may be more general than just in MFS. Researchers are hopeful that these conditions may be responsive to blocking TGF-ß. The understanding of the cause of MFS pathology also has focused attention on TGF-ß as the responsible agent for additional syndromes whose features overlap those of MFS. Loeys-Dietz syndrome, for example, was shown to be caused by mutations in the cell surface receptors that bind TGF-ß. Work with certain other diseases of the matrix (Urban-Rifkin-Davis syndrome and certain muscular dystrophies) has suggested that blunting TGF-ß signaling may be beneficial. The results have also suggested additional targets that may be blocked in MFS, as other molecular events in TGF-ß signaling potentially can be blocked with potential normalization of the phenotype.

EUROPEAM MARFAN SUPPORT NEWORK (EMSN)
MEETING 2009
Report from the 2009 European Marfan Support Network (EMSN) - President Beatrice Preston.

The EMSN Meeting and the EMSN Young Adults Meeting 2009 were held last August in Bergen, Norway, and were hosted by the Norwegian Marfan organisation "Foreningen for Marfan syndrom".

This is a meeting for delegates from European Marfan organisations and guests, who are involved in the running of their national organisations, and the Young Adults Meeting is for young people aged between 18 and 28 years with the aim to encourage them to get involved in the work of Marfan organisations. Delegates and young people from Belgium-Wallonia, Denmark, France, Germany, Norway, Switzerland and The Netherlands attended this year's meeting.

EMSN Delegates meeting

The aim of the EMSN Meeting is to support and encourage each other in our work by exchanging and sharing information, experience and ideas, as well as reporting on medical news from the member countries. In addition, there are medical presentations by Marfan (MFS) specialists from the host nation.
As every year, the meeting began with reports from the member organisations from the different European countries on their activities over the past year. It was good to see that the ideas and advice exchanged in previous years had influenced the work of the national organisations.

Amongst the medical presentations and topics were

- "Marfan syndrome and the heart during adolescence" by Dr. A. Hirth, Norway, included the successful transition from paediatric care to adult care. Transitional programmes offered by projects like the Norwegian "Heart 13+" have been shown to be effective.
- "87 persons with MFS - 56 variants!" by Svend Rand-Hendriksen, Norway, highlighted the many possible combinations of symptoms in Marfan syndrome. In this descriptive cross-sectional study, all organ systems were investigated in accordance with the Ghent criteria. The conclusion is that not all that looks like Marfan is Marfan, and that the Ghent criteria can apply to LDS (Loeys-Dietz-Syndrome) as well. All organ systems should be investigated.
- Mr Rand-Hendriksen also spoke about "Marfan syndrome and physical activity - why is it a problem?" He explained the effects of a mutation in the fibrillin 1 gene on the connective tissue, and he went on to outline what the risks are, what to do and what to avoid when being physically active.
- Kristina Rasmussen, Norway, informed on the physical activity courses for people with aortic diseases at the Norwegian "TRS National Resource Centre for Rare Disorders". The programme includes both theoretical and practical lessons. At the end of the course an individual consultation takes place where each participant receives a comprehensive report with medical details and recommendations for physical activities. Physiotherapists treating these MFS patients or physical education teachers can always contact the centre for advice.
- Yvonne Jousten, Belgium-Wallonia, presented a comparison of losartan trials in patients with Marfan syndrome. She started with interesting background information on beta-blockers and losartan in connection with treating MFS patients, followed by a comprehensive overview of the various ongoing losartan trials in the US and Europe.
- Ruben Martherus, The Netherlands, introduced "Polyneuropathy and Marfan syndrome - is there a link?" based on published studies by Dr Riemer (Norway) and Dr Voermans (The Netherlands). Both authors express the need to raise awareness that MFS can affect the neural system, and that neurological investigation is necessary in order to help patients with complaints of the musculoskeletal system.
- Ruben gave again a much appreciated overview with explanations of recently published studies on a wide range of research issues.
- Katrin Franke, Germany, informed on how the German Marfan organisation deals with people with related disorders and especially with Loeys-Dietz syndrome (LDS). Many LDS sufferers feel comfortable being associated with MFS sufferers, and MFS-centres are also centres for LDS. To address their needs, the German MFS organisation has launched a separate website www.loeys-dietz.de.
- Katrin also reported on the first German seminar on fitness. To help their members in finding suitable training, a four-day seminar on fitness was organised with practical exercises and lectures. The participants found it a challenge to realise what the best form of exercise is for them, and to gauge the amount of exercise they should or are able to do.
- Yvonne Jousten informed on EURORDIS: "It's mission is to build a strong pan-European community of patient organisations and people living with rare diseases, to be their voice at the European level, and - directly or indirectly - to fight against the impact of rare diseases on their lives. To strengthen the voice of people living with rare diseases in Europe." Yvonne explained the benefits for European MFS associations to be a member of EURORDIS, how to join and how to participate in the many activities. www.eurordis.org

EMSN Young Adults Meeting

The young adults, all young ladies this year, had their own workshops and discussion groups, but also participated in some sessions of the EMSN delegates meeting 2009, especially the medical presentations.

Some of the topics that were discussed

Marfan criteria: The medical presentation on "87 persons with MFS - in 56 variants" included a table listing all the criteria for MFS of the 87 persons in the study. The participants felt that these results did not match those of their group. Therefore, they made their own table with all their personal symptoms to compare their results with those of the study. They came to realise that this task helped them to better understand MFS.
Living with MFS: Some participants knew their mutation causing MFS, some were the only one in their family with MFS, while others had many affected family members. However, the family background had no influence on their choices in life.
They had all given their situation a lot of thought, and they choose how much they want to speak about it. Most of them can communicate well with their families, but there is no need to speak about it all the time. Concerning their close friends these mostly know about their disorder, but they don't spend much time talking about it. They prefer to be normal amongst their friends.
The participants found that there is often a difference between how mothers and fathers cope with their MFS child. Mothers get worried, talk a lot with their child/adolescent, and they are very supportive when it comes to meetings, medical information, dialogue with doctors, etc. But some mothers overdo things and tend to speak on behalf of their child. Fathers are more laid back, and do not engage as much as the mothers, but they do care and are there to help if needed. It is very important that parents let adolescents speak for themselves and let them learn to handle their disorder in their own way.
Concerning work, the participants thought that it is important to have a job they can handle and that would not be too strenuous for them physically. The main problem seems to be tiredness. Most of them expect to have to reduce working time at some point and wondered whether they would be able to work at all later on in life.
Marfan causing extra expenses: One of the consequences of having MFS are the extra expenses. Most of the participants were very tall and had problems finding clothes and shoes that would fit. Some of the options where to find the right sizes were expensive shops, mail order from other countries, etc. In addition to clothing, medication can be expensive, an extra set of school books can be costly, special insurance for health and living, etc. In some countries health and life insurance is more expensive if you have a known disease. Also, insurance when buying a house can be higher. There may be special funds and/or social support one can apply for in such situations.
Doctor - MFS patient: The presentation of Dr. A. Hirth on "Marfan syndrome and the heart during adolescence" was inspiring for the participants, and it lead to a discussion about how the dialogue between patient and doctor should be. They thought that it is very important for the doctors to know the patient well and see them as a whole person. Most had experienced doctors only talking about a small part of their disorder, and not seeing all the consequences they experience when living with MFS. It is important for Marfan organisations to communicate to doctors that they should take interest in the patient's life, and not concentrate only on their special medical field.
Having children: One topic that did continuously recur during the meeting was whether to have children or not. Like any young girl, most of the participants had thought about having children. Would it be responsible to give birth to a child that might have MFS? For some the disease is not so bad and they would take that risk. Others thought that it would be egoistic to give birth to a child knowing it might be affected and may have more serious symptoms than the mother/father have.
In some countries the PID method is available, whereas other countries do not allow this yet. There are also the risks for the mother during pregnancy and delivery to be considered. Some would prefer to adopt instead of putting themselves and the baby at risk. It seemed like all participants were well informed from an early age of the possible consequences of a pregnancy, and most had a good dialogue about this with their doctors.
Marfan organisations: For many participants it is important to engage in Marfan organisations. It is good to have contact with other affected people, exchange experiences and share information, to not feel to be alone, and that there are other people who know what it is like to live with MFS. Meetings should be held in a positive setting, not one where one feels sorry for oneself.
It is important to stay in contact with other affected people of the same age. A new Facebook group was established at the meeting to make communication easier, and they had several proposals to improve communication amongst young European people with MFS. They would also love to have their own international meetings for young people with MFS in Europe. The participants thought that it is important for the EMSN and the national Marfan organisations to be visible for young people.

It is with great pleasure to report that part of the travel costs for the Young Adults was covered by the "Youth in Action" programme which is funded with support from the European Commission.
This project has been funded with support from the European Commission. This publication [communication] reflects the views only of the author, and the Commission cannot be held responsible for any use which may be made of the information contained therein'

Closing words

The EMSN Meeting 2009 was again a welcome occasion not only to exchange valuable knowledge and experience during the official sessions, but was also a forum for personal conversations during the breaks.
Most important for European Marfan organisations is to establish or renew close contact with each other to the benefit of Marfan patients. This has already led to people getting treatment abroad and this will hopefully become easier in future. Considering that the population of four fifths of the European countries ranges between less than 1 million to approximately 16 million inhabitants, experienced MFS specialists or even MFS centres are not always readily available. Therefore, our motto "TOGETHER WE CAN" still holds.
The delegates, guests and young adults will meet again on the 2 - 5 September 2010 in Denmark.

Upcoming Meetings and Events:

March 18-20, 2010 -
VIICORD Conference
VI ICORD
International Conference on Rare Diseases and Orphan Drugs
Global Approaches to Research and Patients Access to Diagnosis and Care,
And the Common Issues with Neglected Diseases in Developing Countries
Buenos Aires, March 18 - 20, 2010

In this opportunity, international experts on the field will join us, and you will be able to interact with colleagues from governments, industry, academy leaders and pioneers of patients' organizations.
Announcing Video: http://www.youtube.com/watch?v=zlzawZbQMBI

January to March, 2010 - Events
Associazione Stefano - Bambini e Marfan

Associazione Stefano - Bambini e Marfan has organized the following programs and events - (with dates - check their web site: www.assostafano-bambiniemarfan.it/doriazioni.html for additional information):

Gruppo Vocale Incanto
Elevazione Musicale. Canto e pregihiera
- Domenica, 21 febbraio - ore 17.00

Fiori Muisicali Campagna 5x1000
Come ogni anno vi chiediamo di darci una mano nella realizzazione dei nostri
Rassegna concertistica in ricordo di Stefano Piffaretti
Promo appuntamento
Coro Brianza
Sabato 20, Marzo - ore 21.00
Chiesa Santa Maria Assunta dolzago, Ingresso libero
Info. www.assostefano-bambiniemarfan.it/fiorimusicali_2010 .html

Campagna 5x1000
Come ogni anno vi chiediamo di darci una mano nella realizzazione dei nosri
progetti
Vorremmo dotare il Centro Malattie Genetiche Cardiovascolari di un Cardiologo
che operi in sinergia con l'attuale staff.
Come ben sapete il 5x1000 dell'IRPEF non e una imposta aggiuntiva, bensi e la
rinuncia da parte dello stato di una quota delle imposte a favore delle
associazioni
Puoi aiutarci indicando il codica fiscale dell-associazione 92051470133 e firmare
nello spazio sottostante nell'apposito requadro risevato alle associazione
di volontariato. Info:
www.assostafano-bambiniemarfan.it/doriazioni.html

May 13 - 15, 2010
10th Anniversary of SIMA - Asociacion Sindrome de Marfan -
2000-2010 International Congress del Sindrome de Marfan.

I Congreso Internacional del Sindrome de Marfan,
Salon de Actos del Colegio Oficial de Farmaceuticos de la Provincia de Alicante.
Ten years ago, at the same auditorium of Official College of Pharmacists we celebrated the first General Assembly where a group of affected people, families and collaborators, all together, constituted the association SIMA - Asociacion Sindrome de Marfan. It was formed by those individuals and families affected by the Marfan syndrome. Today, ten years later, we return to the same place where SIMA was born to celebrate the First International Congress and Marfan research, especially the research on improved therapies. We wish to dedicate this meeting to the study "Atenolol and Losartan" - a clinical study related to the research of Dr. Hal Dietz and other esteemed researchers. Speakers featured will be: Dr. Hal Dietz, Dr. Alberto Forteza, Dr. Artur Evangelisto, and Dr. Francesco Ramirez.

PROVISIONAL PROGRAM

Thursday, May 13th 2010

18.00: Work meeting: We will coordinate Scientist Day with speakers, moderators and scientist committee.

Friday, May 14th 2010
Scientist Day

• 10.30: Information delivery
• 11.00: Oficial Inauguration
  Mr. Nicolás Beltrán , SIMA´s President.
  Mr. Jaime Carbonell, COFA´s President.
  Mrs. Sonia Castedo, Alicante´s Mayoress.
  Mr. Joaquín Ripoll, Diputación Alicante´s President.
  Mr. Luis Rosado, Director General Department of Health.
  Mrs. Trinidad Jiménez , Health Minister.
• 11.45: Masterly Lecture.
  Speaker, Dr. Dietz
  Moderator: Dr. Galán. Genetics, Alicante.
• 13.00: University Hospital "Doce de Octubre" (Madrid).
  Speaker, Dr. Alberto Forteza; Surgery, Madrid.
  Moderator, Dr. Patricio Llamas; Cardiovascular Surgery, Alicante.
• 14.30: Lunch
• 16.00: University Hospital "Vall d´Hebrón" (Barcelona).
  Speaker: Dr. Artur Evangelista; Surgery, Barcelona.
  Moderator: Dr. Sogorb, Cardiology, Alicante.
• 17.30: Masterly Lecture.
  Speaker: Dr. Francesco Ramírez.
  Moderator: Dr. Montero, Cardiovascular Surgery, Valencia.
• 19.00: Finish time.
• 21.30: Dinner, Honor members.
• Saturday May 15th 2010
  Psycho-Social Day
• 11.30: Kundalini Yoga.
• 13.00: Sexuality Workshop.
• 14.30: Lunch.
• 17.00: Auto-Help Group.
• 18.30: Laugh-therapy.
• 21.00: Dinner
• 22.30: Farewell Party.

September 2 - 5, 2010 -
The European Marfan Support Network (EMSN) Conference

The next European Marfan Syndrome Network (EMSN) Conference will be held in September 2 to the 5th, 2010. It will be held in Ebeltoft, Denmark. The EMSN Youth Group will coincide with this meeting. For more information, contact Beatrice Preston, at preston5@bluewin.ch.

October 24 - 27, 2010 -
American Society for Matrix Biology

The 2010 Biennial Meeting of the American Society for Matrix Biology (ASMB) will be held at the Francis Marion Hotel, Charleston, SC, USA.
Online Abstract Submission and Registration opening: March, 2010.
Meeting website: www.asmb.net
E-mail Questions to: asmb@asmb.net

Recent Correspondence:

From Japan

Dear IFMSO Editor:
Thank you for your sending me E-News.

We would like to introduce you to one thing.
In 2009, Japanese with Marfan have good news. We, NPO (non profit
organization) have encouraged our Japanese government to establish a study
team of Marfan Syndrome.

Friendship event ceremony

As you know, Japanese with Marfan cannot use the Ghent criteria directly,
because of the deference of race. This year, Japanese government made the
team to study new criteria for Japanese. I hope that the study results save patients with Marfan by early exact diagnosis, and that they will live long and good.

By the way, we changed the Representative Director and contact information.
Please update your contact as follows [Will be done, Editor]:

Japan Marfan Association (JAMAA)
Keiko Inoi, Representative Director
c/o Aichi Japan Intractable Diseases Information Center
N105 COMBi Honjin, 1-24 Matsubara-cho, Nakamura-ku, Nagoya, Aichi 453-0021
Japan
Telephone: ++050-5532-6503
FAX: ++053-454-6764
e-mail: info@marfan.jp
web site: http://www.marfan.jp

Our web site also introduces you board members (but it is only Japanese, sorry).
http://www.marfan.jp/modules/jamaa/index.php?content_id=57

I am sending you some pictures of a ceremony of changing Representative Director
and friendship event as attachment file.

We look forward to meeting with the IMFSO members someday, and I wish a happy New Year for you and every patient with Marfan all over the
world!

Best regards,
Keiko Inoi, Representative Director

[2 Pictures: (attached in separate e-mail)]

News from the Ukraine; India, and Thailand

Recently, we received this contact email from Serge D. (Ukraine), regarding the formation of a web site for a Marfan organization in the Ukraine. We look forward to adding this group to the International Federation of Marfan Syndrome Organizations (IFMSO) and to learning of their ongoing and future activities. If you would like to contact them, their web site is: info@marfan.in.ua

We have also heard from, Chiranjib Nath, from Texpur, Assam, India, regarding correcting his e-mail address: sc.hath15@gmail It is currently listed incorrectly on the IFMSO web site. Sorry - this will be corrected.

We were pleased to hear from Mr. Narongyod M., who has contacted us regarding plans to organize a Marfan group in Thailand. He has provided a web site which is the only web site providing information on Marfan syndrome in the Thai language: http://www.thaimarfan.net and the interactive web access is: http://www.thaimarfan.net/webboard/webboard_index.php
We will list this web site on the IFMSO contact page.
Thank you Mr. Narongyod M.

Netherlands/Dutch Marfan Association

We were also pleased to hear from Ruben Martherus, whom we met at the Ghent Symposium on the Marfan Syndrome in 2005.. He requested a copy of the abstracts, which will be presented at the upcoming 2010 International Marfan symposium. We all look forward to learning of the research presented and made available to those representing IFMSO Member Organizations. Ruben has been active in the Dutch Marfan Association and the European Marfan Support Network. Having completed his studies Ruben has been accepted in a post-doctoral position at the Heart Institute of Cincinnati Children's Hospital. Congratulations, and we wish him the best of luck.

Philippines

We recently received an e-mail from the Philippines, expressing interest in starting an association for Marfan syndrome. We look forward to learning more of this effort and offer our support and best wishes.

Other Marfan-related web sites to check out:

The Internet is a wonderful means to access different web sites in different languages, and an amazing benefit to all throughout the world looking for information on the Marfan syndrome, and research advances. There is an "interactive" web site listed on the National Marfan Foundation - called NMF Connect Forum, which you can learn about on the NMF web site: www.marfan.org There is a blog board which is very popular: You sign on and it is not overly big and includes communications from other countries. There are, of course, a number of web sites, which can be accessed on the Internet, although medical information listed should always be checked with one's doctor or a knowledgeable physician.

I continue to be impressed by the various newsletters from the Marfan organizations throughout the world. The organizations are listed and their web sites are linked on the IFMSO web site, http://www.marfanworld.org and also can be reached directly. I have referred to some before, but continue to find informative and important: The National Marfan Foundation (NMF) newsletter, Connective Issues; the South African Marfan Syndrome Organisation (SAMSO), Connections/Bindings, The Marfan Association UK newsletter also continues to be a wonderful resource and provider of Marfan information. They have a new web site address: http://www.marfan-association.org.uk/ be sure to check it out. This is just a small example of Marfan newsletters, which are being distributed throughout the world, a wonderful network of information.

Spring is not far behind - this for the United States - and I can tell you that I am tired of snow here where I live in New York. Be well, and do keep in touch.

Priscilla Ciccariello, IFMSO President and Editor of IFMSO E-News
February, 2010

Please contact the Editor: Priscilla Ciccariello if you have any questions regarding the IFMSO E-Newsletter, or if you wish to contribute to the articles and news page. E-mail me at: cilla71@aol.com or Peter Ciccariello , webmaster.

IFMSO
C/O National Marfan Foundation
22 Manhassett Avenue, Port Washington, NY 11050
http://www.marfanworld.org

Contact Information

President: Priscilla Ciccariello

Vice Presidents:
Wenche Snekkevik, (Norway),
Justin Nix, (Australia),
Yoko Shimozaki, (Japan)
Pernille Mai Strauss Warren, (Denmark)

Treasurer: Cheryl Williams, United States

Webmaster: Peter Ciccariello