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 am 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
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 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.
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Treasurer
Kees Bosman
I am the oldest member off the Board.
I was born in 1942 in the Netherlands.
The oldest one is a daughter and two sons.
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
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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Director
Jack Johnson
I was born in 1963 in Missouri, a state in the middle of the U.S. I grew up on cattle ranches, a dairy and farms across the Midwest and western U.S. I have Fabry disease along with many family members. We have traced Fabry back to my grandfather’s grandmother. I am fortunate to be be married to Debra and we have two big boys. I am a founding member of FIN and am now honored to be a board member. I look forward to working with the wonderful FIN board to provide help to the Fabry community on a global level. I am also one of the founders and executive director of the Fabry Support & Information Group (FSIG) in the U.S. I believe my years of experience with FSIG will help in FIN’s objectives and I hope to gain beneficial knowledge from greater involvement in the international Fabry community.
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Director
Megan Fookes
My name is Megan Fookes and I am 39 years of age. I am married to my wonderful, supportive husband Mark and have 2 young children a girl aged 9 and a son aged 7. My son has Fabry disease along with myself. We live in Sydney Australia.
My first introduction to Fabry disease was back in 1994 when my father was diagnosed at the age of 48 and I was aged 23, making me automatically a ‘carrier.’ (Back then all women were simply ‘carriers’ of Fabry – we were under the impression that women did not have Fabry!) My father suffered many years of unexplained elevated temperatures, very painful hands and feet and spots around his midriff of which many doctors saw and could not explain. It was following a visit to a renal specialist who saw Dad’s badly swollen legs that contained excess fluid and his angiokeratomas, he received his diagnosis. What a relief to find that all those years of unexplained pain and suffering were not in his head, but in fact caused by this Fabry disease! My parents were keen to find out as much information as they could about Fabry. My mother formed the Fabry Support Group in Australia and had an article published in May 1994 in the Australian Women's Weekly Magazine. The response to this article was incredible and the Support Group was up and running. FSGA have been in operation for 16 years now. I have been actively involved with FSGA since 1999 following the death of my Father. I am the current President of FSGA with a fabulous committee working hard to help the Australian and New Zealand Fabry Community. As a trained primary school teacher and Mother of a young family, I am very keen to help others get a diagnosis and receive adequate care and treatment for Fabry Disease as soon as possible. In Australia we would love to see children and adolescents accessing Fabry ERT too! Australia and New Zealand are very isolated from the world. Combined in the FIN organisation, the world suddenly becomes smaller and the Fabry Community is suddenly quite large! I am very pleased to be part of the FIN Board and am passionate along with all FIN member organisations to help educate and raise awareness of Fabry Disease. FSGA www.fabry.com.au Contact me: megan.fookes@fabry.com.au
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Director
Anna Meriluoto
Hello. My name is Anna Meriuluoto and I live in Helsinki, the capital of Finland. email
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