Fabry International Network

Meet the Board

President

Lut De Baere

I was born in 1961, Belgium.
I’m married and have two sons with a metabolic disease.

I’m the newest member of the FIN board (2009), but I was one of the founding members of FIN in Geneva 2005.

The international landscape and working with all different stakeholders has no secrets for me. It’s very exciting to have been given the opportunity to work with the other, very skilled board members of FIN.

I’m convinced that with a positive and constructive way of thinking and working, we can move many things for the best of all Fabry Patients.

I have no familymember diagnosed with FD, but I think I can be a surplus for the board, because I know what’s also happening within other diseases.

I’m the president, since 1994, of the Belgian patientorganisation for all metabolic diseases. Belgium is such a small country where it should be a waste of time, ernergy and money, if every metabolic disease should have their own association. There are not enough patients who suffers of each metabolic disease.

I’m also the patient representative by the Foundation of rare diseases and OD’s. With this group of people, we are working to prepare the National Plan for rare diseases in Belgium.

The Belgian alliance of Eurordis, http://www.radiorg.be/ has as president .. me. So, I think I may say I’ve got experience in this matter.

Together with the other FIN board members, we want to optimizing the quality of life for the Fabry-patients and their families.

When you want to contact me, don’t hesitate to email me, and I will contact you, asap. Thanks for the trust, and I love to work for FIN!

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Vise-Chair

Erica Schenk

Erica

My name is Erica Schenk- van de Mheen.
I was born in 1957, in a very small place in Holland where even today a few women wear very special costumes, but no wooden shoes.
I' am married, and we have two daughters, and we are living in Fryslân, in the North of Holland

My mother was diagnosed with Fabry disease when she was about 40 years, she has always been very sick and died at the age of 57 of renal- and hart- insufficiency.

My sister (1954) and I are also affected with Fabry disease, just like my sisters son (1976) and both my daughters. (born 1984 and 1991)
The youngest already suffered a little stroke and is since June 2007 on enzyme replacement therapy. (ERT). I had a TIA and also had a CVA, so I started ERT January 2002, to make sure that no more damage was done by Fabry.

Because I wanted to help my children for the future, and wanted to know all about the disease, I joined the Fabry Support and Information Group Netherlands (FSIGN) as secretary in 2002, in the hope to mean something for companions, the same reason I joined FIN in 2008. Please feel free to contact me by email, if you need to talk to a companion, and I' ll try to answer you in my best English.....

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Treasurer

Kees Bosman

Kees

I am the oldest member off the Board.
I was born in 1942 in the Netherlands.
In the year 2000, I stopped working, then it was possible for me to take my pension.

I am married with Tineke and we have three children.
The oldest one is a daughter and two sons.

In 1987, my oldest son had the Fabry diagnose and some months later also my wife. Both have had ERT by home-infusion since 2002 and 2004.

I am President of the Dutch Fabry patient group called “Fabry Support & Information Group Netherlands (FSIGN) since 2002.

I hope, with this work, to help as much as possible all the Fabry patients world wide. email

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Secretary

Ed Koning

Hello. My name is Adrian Koning. I am married to Marlene and together we have three young adult sons and we all live in western Canada. In early 2001 at the age of 43 I was diagnosed with Fabry disease as a result of total kidney failure. What a shock! Also in 2001 I was fortunate to begin enzyme replacement therapy on compassionate use basis, went on dialysis and was blessed to have a live donor kidney transplant.

I want to utilize my skills and talents as a professional engineer to help minimize needless suffering for those with Fabry disease.

I am honoured to be part of the FIN board who along with all of its member organizations is helping to educate and raise awareness of Fabry disease. FIN is developing strong positive relationships with various stakeholders worldwide to ultimately develop a world wide standard of best practises and comprehensive care for Fabry patients, their families as well as caregivers. It begins with finding patients through correct diagnosis and proper treatment. email

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Director

Marlene Koning

Marlene

Hello. My name is Marlene Koning and together with my husband, Adrian, we have three young adult sons. We all live in western Canada.

In early 2001 at the age of 43 my husband was diagnosed with Fabry disease as a result of total kidney failure.

It has been a huge and at times difficult and challenging learning curve to live with someone with a life threatening disease and to watch the impact on our family.

Based on my personal experience, I have a passion to help others who are in a similar situation overcome the stress and strain that this disease has on families and help them to function in a positive manner. My hope is that all Fabry families have access to psychological and social support because Fabry is more than a severe physical disease. email

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