 Adrian (Ed) Koning, P. Eng. - CFA President
Hello. My name is Adrian Koning. I am married to Marlene and together we have three young adult sons, Andrew 21, Matthew 18, and Adam who is 16. In early 2001 at the age of 43 I was diagnosed with Fabry disease as a result of total kidney failure. What a shock! In 2001 I was fortunate to begin enzyme replacement therapy on compassionate use basis, then went on dialysis and was blessed to have a live donor kidney transplant.
For the past several years I have been working with others to secure access and funding of Enzyme Replacement Therapy (ERT) for all Fabry patients in Canada and have been the President of the Canadian Fabry Association since its incorporation in early 2006.
I want to utilize my skills and talents as a professional engineer to help improve the lives of those suffering from Fabry as well as their families and caregivers. Together with the CFA and other patient organizations we are raising awareness and educating society about Fabry disease and other rare disorders. We are working on having Canada adopt a catastrophic and orphan drug program (ODP) to ensure Canadians with rare disorders have access and funding to rare and 'orphan' drugs and therapies that are already available in other parts of the world. In addition Fabry patients and their families require a comprehensive care program that fits their particular needs.
 Evelyn Williamson, VP of CFA
Greetings & Hello to All
As vice- president of the CFA, I would like to welcome you all to our web site.
This
has been an extremely busy year for all Fabry families and Members, I
am personally very pleased with our success in re-instating former
patients back on ERT.
I personally want to send a huge thank you
to all patients and families that attended Meetings, Rallies Etc. to
achieve our goal.
We still have more work to do to achieve our next goal in getting younger people on ERT as soon as possible.
I am counting on everyone’s Support , Opinions&,Advice on how we can reach this goal.
I
have been involved with Fabry since my nephew was diagnosed
approximately 25 years ago, actively for the last 7 years and plan to
continue until all fabry patients have access to ERT in Canada.
I have met many people and have made some wonderful friends, whom are all dear to my heart.
Also,
I was extremely happy with the fantastic attendance at our first
National meeting held in Halifax this past May, it is very benefical
for Fabry families to meet and make new friendships.
I want you
all to know that you can contact me at any time with any concerns that
you may have on Fabry, I will be there for you all.
My hope is this web site will keep all up to date with actitivies pertaining to Fabry & the CFA.
I wish you all good health and for you all to keep your chin up for better days.
 DURHANE WONG-RIEGER, PHD
Along
with her duties as Secretary, Durhane brings a wealth of experience in
patient advocacy to the Canadian Fabry Asso-ciation. Durhane is
President and CEO of the Institute for Optimizing Health Out-comes.
She is also president of the Canadian Organization for Rare Disorders
and founder and head of Consumer Advocare Network, a national network
to provide a common voice for patient organizations. She is a licensed
Master Trainer with the Stanford-based Living A Healthy Life with
Chronic Conditions.
Dr. Wong-Rieger has served on numerous
health policy advisory committees and panels, including Project
Coordinator for the Policy Dialogues for the Ro-manow Commission on the
Future of Healthcare in Canada and consultant to the Ontario Premier’s
Advisory Board on Organ Donation. She was the con-sumer representative
on the federal/provincial/territorial committee to establish an
independent blood agency and was named to the Board of Directors as
well as the National Blood Safety Council.
From 1984 to 1999,
Durhane was professor of psychology at the University of Windsor in
Ontario, Canada. Durhane has a BA in psychology from Barnard College
in New York City and an MA and PhD in social psychology from McGill
University in Montreal.
 RICK SGROI - Treasurer
Rick
was born on Februrary 24, 1957. He spent the past 26 years as a
Financial Planner. He has been married to his wife Mara for 25 years;
they have 2 children: Steven, who is 23 and Sabrina who is 19.
Rick was Diagnosed with Fabry's 1995 and has been an active advocate for Fabry's Disease from 2003 forward.
He
is currently Secretary treasurer for the CFA, President of the CASA
Insurance Agencies Corp. and the Compliance Officer for DeThomas
Financial.
 Julia Strauss
Hello, my name is Julia Strauss; I am 21 years old and currently studying Psychology at Wilfrid Laurier University in Ontario. I am a Fabry patient and have been experiencing symptoms since I was fifteen. On May 10th 2004 my father had a sudden and unexpected heart attack and passed away. Since this time I have been following in his footsteps to make a difference in the lives of Fabry patients. I have been an active advocate by attending provincial, national and international meetings, and in doing so, have met many patients and made remarkable friends along the way. I want to educate, bring hope, and better the lives of both patients and families in any and every way I can. Please do not hesitate to contact me with any concerns or questions you may have.
 Darren J. Bidulka, C.A. C.B.V.
I am a Chartered Accountant and Chartered Business Valuator who has been in the accounting and business consulting profession for the past 17 years. I was diagnosed with Fabry’s in early 2005. Thankfully I haven’t suffered many of the outward symptoms of Fabry’s and was diagnosed before there was significant organ damage.
My wife Lisa and I have been married since 1999. We enjoy the great outdoors through skiing, cycling and hiking, The photo below is from a recent trip to the French Valley in Chile. Fabry hasn’t stopped me from enjoying the health benefits of an active lifestyle.
In addition to the CFA, I am on the board of the Vancouver Chapter of the Association for Corporate Growth.
 Donna Strauss
Hello, my name is Donna Strauss. I live in Ontario and I have been actively involved with Fabry’s Disease and patients since 1990. I bring a true understanding of this disease and the devastating affects it has on a family. My husband John died in 2004 due to Fabry’s.
I was with him throughout his journey and watched him everyday face the challenges with courage. I was at his side throughout all his difficulties and we never gave up hope.
In Ontario I worked hard with the provincial government to help with the funding for enzyme replacement therapy and with this knowledge, I feel I offer a genuine perspective to the CFA.
 Graham Crouse
I started displaying the classic signs of Fabry at a young age and, because of this, was lucky to have been diagnosed at nine years old. There was little that could be done to help me with my symptoms at that time and so I just learned to live with it and try to avoid things that would trigger extreme reactions.
It is only since 2002 that I have been receiving treatment for Fabry and much damage has been done over that time. But not only have I gained hope for the future but also, through treatment, have met many other Fabry patients and been able to share common experiences. Before this I had only once met another Fabry patient.
The Research Study is very exciting and I would encourage anyone dealing with Fabry to look into it. Become educated, visit your doctor and find out the state of your health and then make an informed decision that you are comfortable with. You may not only be helping yourself but a perhaps relative, or even someone on the other side of the country.
Working on this website has also been a great experience. It has been an opportunity to learn about Fabry and also to meet Ysome of you in person and online. One goal during 2008 is to make this website available in both English and also in French. This will be a challenge but will help make information available for many more people.
|
