1) Our first annual Symposium in Ottawa on September 16th, 2018 which will serve to connect LHON families together. The stakeholders in this disease are spread all over the country and lack formal organization in order to be reached on mass or reached at all. Our annual Symposium and continued outreach will serve as a springboard to find and unite this group of people and work together. Building this network is the key and will us allow us to acheive our secondary goals below. UPDATE - Our Ottawa event was a huge success and we are looking to continue the momentum with a conference in Vancouver on April 27th, 2019.
2) Assist with travel costs if required for those who may have difficulty affording travel and accommodations to either the conferences or medical appointments out of town.
3) Develop and build a peer-support network to assist those recently diagnosed with LHON to get the medical assistance, emotional assistance and technological assistance they require.
4) Advocate to pharmaceutical companies and researchers to establish LHON clinical trials in Canada.
5) Advocate for LHON and visual impairment to all three levels of government to get the assistance that many of those with all forms of disabilities desperately need.
6) Fund LHON research through Dr. Rustum Karanjia at the Ottawa Hospital Eye Institute.
The following video describes one of our own, 31 year old Mark Demontis who was affected by LHON in 2004 at age 17. After being diagnosed, Mark had a difficult time with the life-altering condition and it was only when he met someone else affected by LHON when his life changed for the better. With a renewed passion decided to commit his efforts to blind hockey programs by rollerblading across Canada to raise awareness. Now Mark and many of us want to do more for LHON in Canada and that is why we need your support.
By making a minimum donation of $20.00 you can help us acheive our goals for LHON Canada.
PLEASE SHARE OUR $20.20 for 20/20 Sight Fundraising Campaign with your family and friends!
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