European Marfan Support Network (EMSN) Conference
in Berne, Switzerland

Table of Contents:
End of the year comments - Priscilla Ciccariello, IFMSO President
Report from the EMSN - Beatrice Preston, EMSN President
Letters and Events - News from Switzerland, South Africa, Brazil, Australia,
and Japan

End of the Year Comments:

We come to the end of the 2nd year of the IFMSO E-newsletter and are barely squeeking by with this newsletter in December. The days and months go by very quickly, and the International Federation of Marfan Organizations functions under a very loose federation made possible by the miracle of the Internet and the inexpensive means of e-mail communication. It is fortunate that the international world of the Marfan syndrome can be the beneficiary of this technology and provide access to the activities of the Marfan organizations throughout the world. Eventually this real world of Marfan activities will take on the virtual Marfan world of the Internet, enabling all countries to benefit from each other's research and experience. Member Dues and the generosity of the National Marfan Foundation serves to support the IFMSO web site and handles the budget keeping. IFMSO's January issue will be include a financial accounting.

The IFMSO web site has provided a forum for the newsletter over the past two years, featuring several countries in each newsletter, with examples of their activities and resources. Along with this feature of the IFMSO newsletter, there is a "current events" section in each issue available if an organization wishes to share news and events. IFMSO has also been receiving issues of some of the wonderful newsletters that the various IFMSO member organizations send out to their own membership (in their own languages and with their own impressive activities). The newsletters are great to read and provide enormous encouragement and ideas for the entire Marfan community throughout the world.

Three examples of these different newsletters are, Connections/Bindings, now in its eighth volume, produced by the South African Marfan Syndrome Organization (SAMSO), featuring two languages, English and Africaans; Nyhedsbrev, a regular appearing newsletter, chuck full of information, and produced by the Landsforeningen for Marfan Syndrome - the Danish Marfan Association; and lastly, Marfan Matter, a colorful and fun newsletter, from the Marfan Association Victoria, Inc. This newsletter demonstrates the creativity and activities of this active organization in Australia - featuring many, many pictures and scenes - great fun and interest. The Marfan Association Victoria, Inc., is one of two Australian Marfan organizations which were featured recently in the IFMSO newsletter, along with the New South Wales Marfan Support Group - see a note from them in the "Events" section below.

These are just three the many newsletters that are produced and circulated throughout the world, examples of which we receive here in the United States. Of course, Connective Issues, newsletter of the National Marfan Foundation (NMF) has served as a major resource over the years. The first issue of the NMF was in 1981, I believe, and the newsletter remains - along with the NMF web site, as a primary Marfan resource. You can usually see examples of newsletters on the various web sites, or ask for a copy by e-mail. The different country's e-mail addresses are available from the country's organization listing on the left had side of the IFMSO web site home page.

As I mentioned, IFMSO Marfanworld E-Newsletter has been serving as a communication center for two years now. True, the title could be a little more interesting and catchy, rather than Marfanworld E-News, perhaps it could be called, "Worldwide Connections," or perhaps, "Connective Tissues and Issues Worldwide," or how about using the South African Organization newsletter title, "Worldwide Marfan Bindings'? We could have a contest to see if we can come up with a better title for the IFMSO newsletter besides its current rather simple "Marfanworld E-Newsletter"? Ideas? Send them in to the Editor and we can feature the suggestions in the next newsletter. January, 2008.

We are pleased in this issue will feature the European Marfan Support Network (EMSN). We are fortunate to have a report by Beatrice Preston, Chair of the European Marfan Support Network (EMSN) summarizing their recent EMSN Annual Conference activities, held this year in Switzerland . The EMSN includes Marfan organizations of some 12 countries and has been meeting since it founding in1991. Meeting every year, last year the EMSN featured an exciting meeting France when they celebrated the 110 anniversary of Dr. Antoine Marfan's birth in the city of Castlenaudary.

This year the EMSN Conference was held in Berne, Switzerland and, along with the regular work of the and contributions of the EMSN member organizations, the was recognition of a long-time member who was retiring - and great friend to all - Gerhard Zumstein, one of the founders of Marfan Stiftung Schweiz. Gerhard has "retired" from the active role in the Swiss Marfan organization for now, and was recognized at this meeting for his dedication and creative contribution - the most impressive being his sponsorship and organization of the unforgettable 4th Internataional Symposium on the Marfan Syndrome (in 1996) held in Davos, Switzerland. Many of us who attended this conference will remember it as an exciting and informative meeting in the beautiful mountains of Switzerland. It was a centennial event - 1896 - 1996, co-sponsored by the World Health Organization (WHO) and coordinated by the Marfan Stiftung Schweiz providing a first in the collaboration between the Research and Patients communities.

My thanks to Béatrice Preston, Chair, European Marfan Support Network (EMSN) for the following excellent report of the EMSN meeting:

European Marfan Support Nework (EMSN)
Meeting 2007

This year is soon coming to an end and we would like to inform the Marfan-World of the main activity of the EMSN in 2007:

The EMSN Meeting and the EMSN Young Adults Meeting 2007 was held on the 20-23 September, and was hosted by the Marfan Foundation Switzerland (MSS), in the year of its 20th anniversary. Both events took place in Berne, Switzerland.
The meeting is 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. This year, delegates and young people from Belgium-Flanders, Belgium-Wallonia, Denmark, France, Germany, Norway, Slovakia, Switzerland and The Netherlands attended. It was with great pleasure that we could welcome many new and old faces, especially amongst the younger generation. At the same time it was regrettable that some long-standing delegates were unable to attend.

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 specialists from the host nation.

Delegates meeting
The meeting began with reports from the member organisations on their activities over the past year. The achievements in the different European countries to improve living with Marfan were very encouraging, and it was also a pleasure to hear that the organisations are flourishing and that new and younger people are joining the boards ready to share the workload.

Some of the medical issues that were addressed: We were updated on the progress of the Losartan studies. We were given a good overview of the pre-implantation genetic diagnostics (PGD) procedure and the availability of this procedure in The Netherlands. PGD is currently only allowed in some European countries. We heard of a method to stop a leaking dura - which is a rare occurrence that can cause severe headaches - with a so called "blood patch" made from the patients own blood.

Concerning living with Marfan we received the following useful information
In Germany, a very informative book entitled "Marfan-Syndrom", a guidebook written in German for patients, relatives and carers, had been published and has sold really well.
A Danish study revealed the need for social authorities and more medical staff to be better informed about Marfan, especially in view of ageing with Marfan. With regard to employment, women with Marfan living in Denmark are significantly more likely to work reduced hours or to retire earlier than men.
The organisations present were all willing to help and support exchange students, and, on the whole, any person with Marfan who needs help gets supported. It is best to contact the Marfan organisation of the host country and to make enquiries concerning medical care beforehand.

New travel document, a communication tool for travelling abroad
This new document, developed by Germany, will make it easier to communicate with doctors in an emergency when travelling abroad. At the moment, it is being translated into different languages.
It is very different from most available emergency documents which only contain the most important medical facts. In addition to a wide range of medical information concerning a persons heart, eyes, lungs and skeletal problems, the new document includes information on the actual symptoms when a Marfan person falls ill, which can be filled out by the patient before seeing the "foreign" doctor.
When travelling, the document should be taken with in the persons native language and in the language spoken in the country visited. As the documents are identical, apart from the language, the doctor and patient can both identify the same specific points.

Medical presentations
Dr. Armand Bottani's (Department of Genetic Medicine, Geneva University Hospitals) well illustrated presentation on the problems in clinical diagnoses followed by the comprehensive and informative ones by Prof. T. Carrel (Department of Cardiovascular Surgery, University Hospital Berne) on cardiology and Dr. Gabor Matyas (Institute of Medical Genetics, University of Zurich) on genetic testing were appreciated very well, and broadened our knowledge and understanding. Although we did not understand every last detail, the information will certainly help us when counselling people with Marfan syndrome, and when mediating between patient and doctor.

EMSN Young Adults Meeting
The young adults from the different countries bonded quickly and, as a result, their discussions on living with Marfan were open and free to the extent that they even surprised themselves.
These are some of the valuable statements that were made during the discussions:
To explore your boundaries and setting goals for yourself means you are getting to know yourself better.
Some things I can't do, but what matters are all the things I can do.
When informing people about having Marfan: If you yourself can be relaxed about it, then others react much better when told than when you signal insecurity. They all agreed: "No pity! The look that some people have when they feel sorry for us is horrible."
Marfan and work: you have to be careful in your first interview with an employer. Even when your employer understands your problems, your fellow employees might not, which can lead to an awkward atmosphere in the work place. It is important to inform the right person at the right time, which is a very hard thing to learn.
Concerning pregnancy and children: Marfan isn't a disorder that should hold you back from having children, because life with Marfan isn't that bad. However, the big issue was, to exclude Marfan or not.

For the EMSN delegates to witness the courage and enthusiasm with which they handle their lives is the best reward and an encouragement to continue with the work for the benefit of the Marfan community.

Contacts with the MSS
The evening boat ride with dinner on the Lake of Thun, to which we were invited by the MSS, was the perfect occasion to present Gerhard Zumstein (co-founder of the EMSN) with a specially made farewell book from the EMSN. He was very appreciative of the many personal contributions it contained. It was also an occasion to meet some of the members of the MSS board and staff.

The following evening we joined the MSS on the occasion of their 20th anniversary celebration for a reception with speeches, a special dinner and innovative modern Swiss style music. A presentation was given by the MSS president, Angie Hagmann, on the origins and the history of the Foundation. The EMSN presented the MSS with a birthday cake, and a specially designed birthday card (see special feature Marfan Foundation Switzerland).

The EMSN Meeting was once again an excellent occasion to strengthen the Marfan network in Europe, which is very important in view of the European Union growing bigger and stronger.

On behalf of the EMSN members.

Béatrice Preston, Chair
European Marfan Support Network (EMSN)
Römerweg 4
CH-4410 Liestal
Switzerland
Tel.: 0041 61 921 91 89
Email: preston5@bluewin.ch
www.marfan.eu

Recent and Future Events

IFMSO Newsletter - Letters and Events Section

Letter from Gerhard Zumstein, Marfan Stiftung Schweiz, long time EMSN member following his retirement at the EMSN meeting (see above):

My dear friends

It was so nice to meet some of you again during the weekend one week ago; It was too bad not to meet everyone who left his traces in my heart; and it was sooo good to see a number of new faces, the only thing that promises that "the thing" will go on!
I would want to thank you, and I can only do it with these few words, for the wonderful, very personal and touching gift you have presented to me. Thanks so much to everyone who has contributed his thoughts, photos and things I had forgotten ... and very special thanks to Achim, who has put all together in a absolutely unique and "uncopyable" book, with so much devotion and love for the little details which make the difference!
There are a hundred things I would want to ask and know about everyone - hélas, I must leave things the way they are ... fortunately in my memory, they are good and it is time to say GOODBYE.

I wish you well in ever way and I thank you for having been tolerant at times, because I do know I am not always easy to absorb. But do know that I did always love you and that I had great respect for each of you on and in his own way.
Who ever may be your God, saver or caring companion: I wish he stays close to you, bless you and when needed, comfort you.
Yours for ever,
Gerhard Zumstein,

______________________________________________________________________

Report from the South African Marfan Syndrome Organisation (SAMSO)
-- Suid-Afrikaanse Marfansindroom Ondersteuningsgroep

TREATMENT TRIUMPH IN AFRICA

SAMSO sometimes ends up with members in distant countries as a result of the queries about Marfan Syndrome that we receive from English-speakers throughout Africa. One of these members (B) in Eritrea in North Africa on the Red Sea had a big problem recently.

In September we received an urgent e-mail from his brother telling us that B's only usable eye was deteriorating. He had successful surgery in Eritrea in 2004 for ectopia lentis, but now the retina was starting to detach. The specialist said that treatment was urgently needed in order to save his sight, but South Africa is the only place in Africa where retinal repair surgery is available.

E-mails flew back and forth between the concerned brother and me as we tried to organise the treatment for B in South Africa.

We encountered various challenges, including:
· funding;
· ridiculous quotations for treatment, transport and medical supplies (the most expensive was up to eight times the cost of the cheapest for the same thing!);
· I had flu and lost my voice;
· the surgeon, who agreed to do the operation for free, left for a month in USA;
· finding someone to stand surety for the visa application;
· accommodation and transport in South Africa;
· electrical storms that resulted in no telephone, fax or e-mail just when the letter from the surgeon was needed for the visa application;
· a donation in kind that could not be used;
· no direct flight from Asmara to Johannesburg, resulting in a two-day stay in Cairo.

I am thankful that this has been a once-off event as I acquired many more wrinkles and my last few brown hairs turned white during the stressful and anxious time, when I frequently despaired of ever sorting things out. However, perseverance finally overcame all the seemingly insurmountable problems and, with the encouragement and support of some wonderful and caring people, the story has a happy ending.

B arrived in Johannesburg on 23rd October (later than hoped, but still within the urgent treatment window), he saw the specialist on the 24th and had the operation on the 25th. By 10th November he could already read with the repaired eye. At 31, he can now look forward to a constructive future.

LORNA HIGGS - Chair: SAMSO (SA Marfan Syndrome Organisation
________________________________________________________________________

Letter from Flavia with an update of the Marfan Brazil Association
November 12, 07 :

Dear all,

I am very happy to inform you that on Sept 29, 2007 we gathered together many Marfan people here in Sao Paulo - Brazil. They came from outside Sao Paulo to see all doctors in the same day (cardiologist, ophthalmologist, orthopedic, geneticist, physiotherapist, psychologist). More than 30 people attended. Also, many exams were made such as echocardiograms, ophthalmic procedures, XR, etc.

It was a great opportunity for everyone that does not have the chance to see all doctors in their own cities. In many cases, there are not specialists outside Sao Paulo, so this was a unique opportunity for the Marfan community.

Dr. Antonio Carvalho, a cardiologist from the Marfan Multidisciplinary Group, and
came up with this terrific idea. Dra. Ana Beatriz Perez, together with Dr. Carvalho helped in the event. Marfan Brazil Association was responsible for sending the invitations and organizing the agenda.
I would like to thank all doctors that dedicated their Saturday to see the patients.

Best to everyone,
Flávia Di Gioia Heumann
Marfan Brazil Association

News from Trudy Whaite - Australia -

The following article link was sent to me by one of the website's community members - other than Trish - who also lost a daughter because of Marfan syndrome this year -
http://www.narooma.yourguide.com.au/news/local/general/mothers-marathon-walk-for-her-daughter/1074710.html featuring Trish Carey from Narooma in NSW, who will start her marathon walk combined with bike ride from Adelaide to Canberra - no mean task - taking place on the 5th of January '08, the height of Australian summer. (www.marfan.net.au) Trish lost her daughter, aged 28 and who had Marfan syndrome, to an aorta dissection 3 years ago. Prior to the 29th of December there will be some media releases of Trish's television interviews.

The walk is meant to spread Marfan awareness and also raise funds for Marfan research done by the Queensland Marfan Research team, led by Prof.Malcolm West.

Trudy Whaite,
www.marfan.net.au including www.marfan.net.au/queensland

News from Japan

Japan has long had a Marfan organization, under the leadership of our good friend and valued worker, Yoko Shimozaki, who has been provided leadership for the Marfan Network Japan. We have had notice of an additional Japanese Marfan organization, the Japan Marfan Association, and below is an Activities Report from their representative, Hiroshi Yokozeki. We want to thank him for the report of the impressive activities and we look forward to their continued work on behalf of Marfan with the other Marfan organizations, both in Japan and throughout the world. "In unity there is strength" - (Editor):

Japan Marfan Association
Sent in by: Hiroshi Yokozeki, Representative - Activities Report:

1.Activities for collecting and providing information
·We introduce information about Marfan syndrome from internal
and external sources on our website as needed.
·We post medical news and biweekly e-mail "Marfan
Journal" newsletters.
·We present questions and answers along with interviews of
medical experts and publish them on our website.
·We send out questionnaires to collect more correct information
from Marfan syndrome patients.(e.g. surveys on comparison
between emergency surgery and elective surgery, and the use of
antihypertensives)
·We introduce medical facilities to patients and their families.
2.Activities for education
·We regularly hold study sessions for the public and patients.
We have now held them 18 times in seven prefectural and city governments
·We held a medical lecture called " Marfan Forum in 2006 in Osaka" for the public.
·We made a proposal to the Ministry of Health and Welfare for
Marfan to be designated as an incurable disease.We co-host symposiums
and concerts for supporting incurable diseases.
·We have exhibition booths and distribute brochures for
education at conferences, such as cardiovascular surgery,
orthopedics, pediatrics, and school health.
3.Activities for communication
·We formed a patient and family group called "Marfan
Friends".
·We set up open bulletin boards on our website and placed the
JAMAA (Japan Marfan Association) community on Mixi, a Japanese social
network service for online communication.
·We communicate among patients with Marfan syndrome, patients
with Marfan-like diseases, patient groups, and support groups.
·We hold meetings to interact with patients, their families,
and those who are involved with Marfan syndrome in many parts of Japan.
4.Activities for managing our association
·We started a specified non-profit corporation, JAMAA.
·We participate in workshops of peer counseling and health care
association management.
·We became a member of IFMSO and NMF.

Hiroshi Yokozeki
Representative - Japan Marfan Association
e-mail: hyokozeki@mac.com