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 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

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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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

My name is Anna Meriluoto and I live in the Helsinki area in Finland with my beautiful 6-year-old daughter. I work as a college teacher with a background in event production, marketing and PR.

I was diagnosed with Fabry disease in 1996 at the age of 28 along with my mother and my older brother. I consider myself to be the lucky one in the family since my Fabry symptoms are relatively mild and I have been able to lead a very normal life as a Fabry affected person: study, work and do sports. Therefore I am not receiving ERT unlike my mother (a heart patient) and brother (a kidney patient). I also feel very lucky because my daughter has not inherited this disease from me.

I have been an active member of the Finnish Fabry Association since its establishment in 2003. In Finland we only have 27 diagnosed patients so our need for international relations and co-operation is enormous. I joined the FIN co-operation as the Finnish representative in Amsterdam in 2008. I see the role of FIN as a vital network between national patient organisations, pharmaceutical companies and other stakeholders. I feel honored to be a member of the FIN board along with my extremely competent colleagues from around the world. FIN has achieved great things already but there still remains a lot of work to do be done.

Everyday life with a life-threating chronic disease is not easy. In addition to the physical problems the disease can be mentally very challenging, both to the Fabry affected as well as their family members. Because of this the support groups on both national and international level are of utmost importance. We all need to get in contact with other affected people in order to get peer support, information and help. Sharing our individual stories and experiences provides us all with the best possible non-medical remedy.

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