Darren J. Bidulka, C.A. C.B.V.
President, Canadian Fabry Association
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.
RICK SGROI - Vice President 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.
Adrian (Ed) Koning, P. Eng. – Past President
Hello. My name is Adrian Koning. I am married to Marlene and together we have three young adult sons and live in Edmonton, AB. 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 CFA board who along with all of its members is helping to educate and raise awareness of Fabry disease. CFA is developing strong positive relationships with various stakeholders not only in Canada but throughout the world 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 ensuring they receive access to proper treatment including life saving enzyme replacement therapy.
François Chabot - Treasurer
Bonjour, mon nom est François Chabot. J’ai 25 ans et je vis à
Québec. Personne de ma famille n’avait été préalablement diagnostiqué
avec la maladie de Fabry alors que j’ai appris, en juin 2007, que j’en
étais atteint. Suite au diagnostique, ma sœur et ma mère ont été se
faire tester pour révéler qu’elles étaient toutes deux porteuses de la
maladie, mais heureusement, notre condition est stable. Je suis un
nouveau membre de l’équipe des directeurs de L’ACF depuis l’automne
2008 et j’espère que mes études et mon expérience de travail en
biotechnologie me permettront d’être un atout pour l’association. J'ai
des symptômes typiques de la maladie de Fabry depuis que j'ai 6 ans,
mais je me sens chanceux, car je suis en bonne santé. Je ne reçois
actuellement pas la thérapie de remplacement d'enzymes parce que mes
symptômes ne sont pas assez sévère pour justifier mon inclusion dans
l’étude (CFDI). Je vie avec ma copine Nathalie et nous partageons
plusieurs passe temps tel jouer au golf, à des jeux de société et à des
jeux vidéo. Si vous habitez à Québec, n’hésiter pas à me contacter pour
quelques questions que ce soit!
Hi, my name if François Chabot.
I am 25 years old and I live in Quebec City. I was diagnosed with Fabry
disease in June 2007 when no other member of my family had been
diagnosed. After my diagnosis, my sister and mother tested positive for
the disease but our condition is stable. I am a new member, along with
my sister Mariève, on the board of the CFA since fall 2008, and I hope
my studies and work experiences in biotechnology will be an asset for
the board. I’ve had typical Fabry symptoms since I was 6 years old, but
I have learnt to deal with them, and I feel lucky to be so healthy. I
am currently not receiving enzyme replacement therapy because my
symptoms aren’t severe enough to justify including me in the ongoing
Fabry study (CFDI). I live with my girlfriend Nathalie and we share
many hobbies such as golfing, playing board games and playing video
games. If you live in Quebec, please don’t hesitate to send any
questions you may have my way!
Evelyn Williamson
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.
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.
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. Mariève Chabot
Bonjour à tous. Mon nom est Mariève Chabot et je me sens extrêmement privilégiée de maintenant faire parti de l’équipe de directeurs de l’association canadienne de Fabry. En collaboration avec mon frère François, j’espère que nous pourrons répondre à toutes les questions et attentes des patients du Québec. N’hésitez pas à me contacter directement, ou à vous joindre a notre groupe « Canadian Fabry Association » que vous trouverez sur « facebook ». J’ai hâte de vous rencontrer!
Hi everyone. My name is Marieve Chabot and I feel extremely lucky to have the privilege of representing you on the CFA board. In collaboration with my brother Francois, I hope we will be able to answer all your questions, concerns, and meet your expectations. Please don’t hesitate to contact me, or to join our « facebook » group by searching under « Canadian Fabry Association ». I’m looking forward to meeting you!
Carla Mansfield
Hi!
My name is Carla Mansfield. I live in Nova Scotia. My
immediate Fabry family history includes; my grandfather, who died at the age of
46 when my mom was only 17, passed on to his two daughters, and continued on to
my younger brother and myself. My brother has two sons so the disease stops
there on his side and I have two children, the oldest, my daughter Rachael has
Fabry and my son Matthew does not. I was diagnosed with Fabry Disease when I
was 10 years old. Symptoms started in the teenage years and seemed to worsen
after having my children. I have been on ERT since 2003.
Knowing first hand many of the challenges that Fabry
families endure either having the disease or being a parent of someone with the
disease, my wish is that I will be able to contribute with knowledge and
experience.
I have been actively involved since 2002 and am proud to
work with the CFA on continuous goals to help Fabry patients and their families
for
better days.
Matthew H.
Welcome to our Community.
I’m Matthew H.
I’m 30 years of age and reside in beautiful British Columbia.
I was diagnosed with Fabry disease in 2007 after the swelling in my legs and ankles was enough to warrant kidney testing. We knew since I was young that something was wrong due to bouts of body-wide pain. However, we were surprised by fact that this was caused by a little know genetic disease, not a figment of the imagination.
Of my entire family, only my mother Patricia and I were diagnosed with Fabry - 2 siblings were spared. Our family has a long history of fighting the disease’s twists and turns, even before a diagnosis was realized. Now we know it’s two people afflicted, not just one (a wife/mother whose heart is swollen and a son/brother with known pain and physical afflictions).
Our family is still strong. My support group has grown to include my wife Carolina and her family. During my first surgery - a kidney biopsy - my mother in-law, Mary, flew in to ensure everything went as expected.
Being afflicted and handling the general symptoms of Fabry is, in my opinion, similar to learning to drive. It’s new and difficult, but you learn to deal with it as best as you can. The best way is through support and knowledge.
As a new member to this board of the CFA since 2009, my sincere hope for the future is to assist in bringing this orphan disease to a greater awareness.
Together we all will help advance Fabry knowledge.
Don’t hesitate to contact myself or any other board member with any questions or concerns.
I always say, “When in doubt give us a shout, not asking is not knowing what the cause of the concern is about.”
Sincerely, Matthew H. Fabry Supporter Chefmjh@ gmail.com
Darren J. Bidulka, 
RICK SGROI - Vice President
François Chabot
Donna Strauss
Graham Crouse
Mariève Chabot