When Barriere helped Connor McKirdy, it started a national movement to help others

letter to the editor from Therese McKirdy, CEO, Clinics & International Chair - idic15

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To the editor;

We are fast approaching a very important anniversary. One year ago, this wonderful community of Barriere came together and provided our family and our little Mr. Connor, with a second chance.

This was a trip to Boston to see the only specialist in the world familiar with treating one of his rare chromosome conditions, Idic15 (Chromosome 15q 11-13 Duplication Syndrome)

I would like to now update with how things have progressed since that trip.  After our return, we realized that we could not make that trip every few months to follow-up.  After three months of many emails, phone calls, and teaming up with another Idic15 mom in Vancouver, Idic15 Canada was born.

This organization now has four actively working clinics across Canada, with incredible teams of specialties in every medically concerning areas of Idic15.  We have four of the top Canadian Scientific Minds on our Scientific Advisory Board, and, as of a few months ago, we have had World Idic15 Awareness Day proclaimed by the provincial Government.  The date is October 15, the day that Connor and I left for Boston.

We have been gaining in momentum as we approach the Awareness Day, with incredible support from The Rare Disease Foundation, Canadian Organization of Rare Diseases, and more.  We even had a video sent to us made by ICE PILOTS NWT Production Team to post on our Facebook Page.

We have been featured in the Canadian Medical Journal and the Pediatric Medical Journal, and will be featured along with one of Clinics, on Calgary’s Global TV.

So much awareness has already paid off, as we know of three children that have been diagnosed and treatment started as a direct result of the advocacy of Idic15 Canada.

We have teams in place to start the much needed clinical research.  Research that can help Connor and children like him now.

All of this started with the generosity of you, the people of Barriere, in sponsoring our Connor.  This is our “pay it forward” as our token of immense appreciation.

We are making and wearing ribbons, purple for epilepsy and green for growth and change on October 15. Again, we  thank you… Therese, Walt and Connor McKirdy.

To view the Awareness Day Initiative go to https://www.facebook.com/Idic15Canada

Therese McKirdy, CEO,

Clinics and International Chair

www.idic15canada.ca@idic15canada

 

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