VOLUNTEERS: The backbone of our support system. We are grateful for everyone’s hard work & dedication in helping to make a difference for those dealing with Syringomyelia.
www.syringomyelia.ca & www.smawareness.ca
(Syringomyelia Awareness) was founded by Carion Fenn and is operated by volunteers' around the world ie family, friends, and those living with Syringomyelia (SM).
Carion Fenn (SM)
Founder
Ontario, Canada
info@syringomyelia.ca _____________________________________________ Alberta Representative Kathleen Scrivano is a special Education teacher in Edmonton, Alberta, who is currently living with Chiari 1 Malformation, Syringomyelia, and Fibromyaglia. She believes she aquired Chirari 1 Malformation and Syringomyelia from a car accident in 2001. She is very excited to be a part of this website and hopes to help others who first learn of this condition. She knows the lack of knowledge there is out there about this condition, which include medical staff. ____________________________________________ Counselling: Life can be hard. People seek counselling for various reasons. Often, they are feeling bothered by something for too long or their issues seem too overwhelming and complex to work through on their own. Counselling gives clients an opportunity to talk openly about their concerns in a confidential manner with a trained professional. ___________________________________________
ww.syringomyelia.ca
Carion Fenn Loves Design! Carion has been praised for her innovative approach to design and for giving interior spaces that 'designers' touch'. Carion's portfolio includes the titles of Home Show Coordinator for the Walls Windows Furnishing Association, Program Director and Show Committee Chair for "The Canadian Decorators Association", Designer for feature spaces in major home shows, and Feature Designer for 'Divine Restoration,' as seen on Sun TV & Vision TV.
But design is not the only thing Carion has a passion for; she is also known for her heart felt compassion and dedication in providing a virtual home for those suffering with Syringomyelia around the world. Syringomyelia is a condition where a fluid filled pocket known as a syrinx blocks the flow of CSF fluid in the spinal cord. Through the websites Carion has founded: www.smawareness.ca & www.syringomyelia.ca
Carion was a victim in a car accident which lead to her acquiring Syringomyelia. Like most people, she had never heard of Syringomyelia prior to being diagnosed. This rare neurological disorder which is only acquired one of three way: in the presence of a tumor in or around the spinal cord, as a result of a trauma, or as a result of a congenital deformation: is very debilitating and painful. There is no cure for Syringomyelia, but with new research being done, Carion is instrumental in making sure all those who suffer with this condition are kept aware of the newest information available.
Carion has earned considerable recognition with media appearances on CITY TV, CHTV, TV ONE , ROGERS 10, CFRB1010, and Flow 93.5 FM. Carion has also been recognized for her generosity and devotion to raising awareness for Syringomyelia and other rare conditions.
www.carionfenn.com
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Charlie Milne (SM)
Nova Scotia Representative
Halifax, NS Canada
Syringomyelia Awareness Social Network
Canadian Group
Our thanks to Charlie for her beautiful photo's.
Photo's by Charlie Milne
Christine Webb (SM)
Volunteer
Henderson, NV
United States
USA Representative
Syringomyelia Awareness Social Network-American Group
christinewebb@syringomyelia.ca
Christine worked as a Dining Services Coordinator at an airline in NV where she decided to go back to school to become a nurse. Christine received her license as a phlebotomist which is what she did at the hospital when she got into the accident that changed her life. Christine had thyroid cancer removed in two surgeries in 99. She was told that her cancer was back in 02 but it was a false alarm, thank God. A loving mother of 3 and wife, Christine is on the path of helping to make a difference for those living with Syringomyelia. She hope that God will provide a cure which will give her the ability to live pain free someday, and maybe even finish her nursing program so that she can be the nurse she had planned on being...
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Kathleen Scrivano (SM)
Alberta Representative
info@syringomyelia.ca
www.syringomyelia.ca
David Burnes, B.Sc,
MSW (clinical), RSW
Counselling & Life Coaching
BOARD OF DIRECTOR
Social Network - Counsellor
www.syringomyelia.ca
www.easycounselling.com
His credentials include: Lecturer at Humber College Institute on Developmental Psychology, Social Policy, and the Canadian Social Service System, Toronto ON. EasyCounselling, Toronto ON. Counselling and Healing Services, Toronto ON. Child, Youth and Family Services, New Zealand. MSW Internship: York University Counselling and Development Centre, Toronto ON. Peer Counsellor, Student to Student Support Services, University of Guelph, Guelph ON.
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NANCY (SM) & ALEXANDRIA
Volunteers
London & Toronto, ON
Canada
Andrea Mills
Administrative Executive
Toronto, ON Canada
BOARD OF DIRECTOR
info@syringomyelia.ca
www.syringomyelia.ca
__________________________________________
Natalie Terry (SM)
Volunteer
Florida USA
Facebook Syringomyelia Group
_________________________________________
Gitte Jespersen (SM)
Volunteer
Denmark
Syringomyelia Awareness Social Network
Denmark Group
_________________________________________
Rodolie Maranion
IT Professional
Chicago, IL USA
Volunteer
____________________________________________
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Exodus Graphix
Not just a design but a creations
416-410-3566
Volunteer
Graphics design, logo, flyers, and all printing materials.
Sue Ajodhia, owner of Toronto based salon "Passion Hair Creations Corp" is known by her peers as an award winning hair designer, and artistic director of her own style book and website. Her success is a result of her versatality, her compassion for others, her natural flare for creativity, and many years of hard work and giving back to the community. Sue is a dedicated individual in helping others and helping to support in making a difference for others. www.passionhaircreations.com/
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WELCOMING ANGELS (www.smawareness.ca)
Syringomyelia Awareness Social Network
Our Angels headed up by Nicole McFadden (sm), will be a new members first experience with members on our site. Hopefully, this will help ease the new members and especially the newly diagnosed into the group, introducing themselves and the things available on the site. Our welcoming angels are also first to wish our members a happy birthday. Our regular reps will still be welcoming new members as well, but it will be to let them know that if they need help navigating the site or locating resources on the site, they have a name to contact. Please join us in Congratulating:
Middle Village, NY USA
Nicole McFadden (sm)
~sm angel
Ear Falls, Ontario Canada
March 2010
Outstanding Social Network Participant
A mother of 3 children; Isabelle (16), Adam (21) & Chrystelle (24) who made me a grandmother; Aryelle (5) & Serena (1). I have been suffering with many symptoms since 2007. After falling in 2008, injured my neck. That's when they found I had disk denerative disorder, pinched nerves at C-6. In January 2010, they found a syrinx in my MRI. It's the day that I found this site. It has been a Blessing to be part of this wonderful group!
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Jody Lott (sm)~sm angel
Kingston, ontario Canada
February 2010
Outstanding Social Network Participant
This is my first time joining something like this. My "struggle" with my health hit hard on Christmas Eve 2008, and I've been trying to figure out what the problem is eversince. My symptoms are multiple and continue to just get worse, the latest being intense pain and muscle spasticity. I have been significantly affected by this and just want to find some answers so that I can begin treatment and work towards getting better.
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Joann Saggese (sm/acm)
~sm angel
July 2010
Outstanding Social Network Participant
I am married and have 2 great kids. They are happy and healthy. I am grateful they are in HS and College and I'm not toting them on my hip any more! It's getting harder and harder to tote myself around these days. Trying to make the best of a bad situation. On meds in the mean time....hate the side effects but at this point, I have no other options.
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Leslie Alexander (sm)
~sm angel
New Smyrna Beach,
FLorida United States
I have a syrinx from T8 through T11 which has caused dramatic changes in my life. Nearly five years ago I began to have incredible pain in my feet which eventually migrated up my legs and now consumes the entire lower half of my body with occasional pain in my hands, forearms and shoulders as well. It has taken a very long time for medical professionals to determine that the syrinx is the culprit of my chronic pain and all attempts made for relief have been ineffective...including several steroid injections and a spinal cord stimulator implant trial as well.
Having gone from a very independent, active working professional, wife and mom to being very dependent on others has been extremely difficult. Surely there is more fun to be had! At 45, I'm just not ready for my life to be reduced to this.
I hope to gain and give support to those of you who can relate.
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Jennie Sipos
Facebook, admin
Ontario, Canada
In 2009 my life changed. I had an accident and waited six months for the MRI following that accident which brought on worsening fatigue and major migraines. Then in Dec. '09 the doctors found that I had Chiari 1 Malformation and syringomyelia. I'd never heard of these before and I was so confused and hurting a lot. In August 2010 I had decompression brain surgery which has helped to stop the progression of my illness but I still suffer and have lost the strength in my arms to lift anything. Prior to this accident I did enjoy a media career and graduated from Ryerson's Radio & TV Arts program. In 1993 I got married and became a stay at home mom. In 2001 I got divorced and am now a single mom. In 2008 I went back to College and earned my diploma as an Educational Assistant, now following the surgery and accident I am unable to ever return to that job as an Educational Assistant because I am unable to lift and part of the job requirement involves lifting. My aim with the Syringomyelia Chiari Support group is to spread awareness about this often misdiagnosed condition. I hope that one day they will get charity status and we will be able to raise funds for research and be able to help others. Meeting others that share the same pain makes it so much easier to cope when you know others who've been there and understand. Together we are strong, together we will survive! Best wishes,