"You are my first patient with Ehlers Danlos Syndrome. To be honest, I don't really know much of anything about it."
"I'm afraid there's nothing else I can do to help you."
“What do you mean there aren't any EDS specialists in Canada?"
Those are a few of the many statements someone with EDS hears from countless doctors and specialists we encounter.
Ehlers Danlos Syndrome Onatrio will be holding various fundraisers to raise money to 'create' an EDS expert in Canada.
How do we plan to do this, you say? Well... we plan to raise enough money to send one (or more) doctor(s) to the 2012 EDNF Medical Conference. There, they will attend educational seminars to expand their EDS knowledge. They will also get the opportunity to network with the world's leading EDS doctors!
We have a few doctors that have been treating Ontario EDSers on the candidate roster. These doctors would be giving up 4 days of their work/personal time to attend the conference. They would be doing this for our benefit! We hope to sweeten the deal by covering the major costs.
Our first event is being held on October 15, 2011 at
Boston Pizza,
2011 Winston Park Drive Oakville, ON
Tickets are $20, with $10 covering food costs and the remaining $10 going to EDSO
If pizza isn't your thing or you can't make it, you're still more than welcome to Chip In. The icon is on the right hand side of the page.
Any remaining funds will be used for scholarships for deserving individuals to attend the 2012 EDNF Medical Conference and EDSO upkeep costs.
Thank you for your time, and for checking us out.
2011 EDNF Learning conferenceGetting to meet and visit with online friends for real!!!
Tiffany with her heroes, EDS experts Dr. Fraser Henderson (Neurosurgeon) and Dr.Clair Francomano (Geneticist).
This summer most of the people in our EDSO group made multiple ER runs, and some of us had the luxury of surgeries and being inpatient. Thankfully we're deeply connected and take very good care of each other.
We share many of the same doctors and sometimes get together after appointments to decompress, exchange information and laugh together at the insane amount of obstacles we're constantly facing.
Holly (center) is a grad student at York University and has been conducting research on sensorimotor neuroscience. She presented her findings on EDS and visuomotor proprioception at this year's EDNF conference. Some of us were her lab-rats, and are more than happy to participate again in her next study. 
Prior to the 2010 EDNF conference, a group of EDSers from Ontario was formed online where we met for real at the conference. After that, we decided there needed to be a lot more EDS awareness, research and education in Ontario. We were going to be the change. Since then, we have started to set precedents and have no desire to slow down. 
