A Tribute - Epilepsy Awareness Month

Date:April 2, 2014

Purple Hair 4 Epilepsy draws attention to the need for research funding

Epilepsy Awareness Month (March) in Canada has just ended and we spent a great deal of time focusing attention to this very important cause. In fact, as the Executive Director for Epilepsy Canada, I joined my colleague and good friend, Phil Newsome, in dying my hair purple on March 26th. I can say that it wasn’t an idea that I jumped on immediately. This was Phil’s second year creating ‘Purple Hair Day’ and I was a reluctant participant – must be the vanity. However, I can say that I was glad that I did it. It strengthened my own belief in our cause.

Over 300,000 Canadians, including myself, have been diagnosed with epilepsy. Another 15,000 will be diagnosed this year. Children and seniors are the two most frequently diagnosed groups.

The seizure inducing condition is not a disease. It’s a neurological issue affecting the brain and is much more common than people realize.  Epilepsy affects one in every 100 people worldwide.

I want to pay tribute to the many people that I have met over the past three years who have made a difference:

  • Katie Woudstra – the young teenager from Haliburton whose life was suddenly turned upside down when she experienced her first set of seizures in high school. Katie’s family and friends rallied around her and formed a fund-raising event called Katie’s Run that is now going to take place for the 3rd year in a row at Sir Sam’s Ski and Bike Resort this summer. This small community has raised over $30,000.00
  • Louise Robillard – Louise was instrumental in helping Epilepsy Canada have access to the Scotiabank Theatre in downtown Toronto where two years ago we held a ‘gala’ movie premiere featuring Rylie Behr, a young aspiring actress from Des Moines, Iowa. Rylie, who also is epileptic, wanted to tell her story so kids could see that it is possible to live their dreams. Quietly, Louise, an epileptic herself, supported all that we did and more. This event raised over $35,000.00 for epilepsy research.
  • Danielle Kerr – Danielle had seizure surgery which was successful in removing the ‘focal’ point of her seizures. In Grade 8, a couple of years ago, her friends and schoolmates rallied to raise over $1,800.00 for research.

And to these people who have made a huge commitment to making a difference for our cause at Epilepsy Canada.

  • Phil Newsome, Julia Morrison Duller, Bill Hutchison, Jaime Weatherbee, Ann Gillie, Rylie Behr, Greg Van De Moortele, Jacques Brunelle, Brian Galloway, AnnMarie Ryan, Jeff Hieminga, Geri Woudstra, Trudy Pogue, Melodie Robar, Valerie Rother, the Bishops, John Conn, John Goodman, Lauren McCarthy 

With correct diagnosis and medication up to 70% of epileptics are able to live productive lives, seizure free.  But much more needs to be done to find therapies to help the 30% who have seizures that are resistant to drug therapies

During March we encouraged people to donate to Epilepsy Canada’s research grants program.  Since 1966, Epilepsy Canada has annually funded important epilepsy research projects at major Canadian hospitals and universities.  Money raised by the Purple Hair 4 Epilepsy and other initiatives will contribute to keeping the finding program alive.

We continue to need your support and hope that you can find the will to make a contribution even today.

Anyone who wishes to sponsor Gary (even now) or others who have pledged to colour their hair purple can do so online at www.purplehair4epilepsy.com

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Comments:

"Gary, I must thank you for giving me the opportunity to help out. Your courage, perseverance and leadership have been inspirational to me."
Phillip Newsome | Homepage | Apr. 2, 2014 (03:51:43 PM)

 

Date:April 2, 2014