First of all, I would like to thank, on behalf of all CHD patients, Dr. Oechslin, Jeanine, Carole, and the entire team at the clinic who have put on this conference for us, the patients, Without their efforts there would be no conference, and without their constant encouragement and guidance CCHA would not be what it is today. We owe them a huge debt of gratitude!
Shelagh has written about the conference in general (click here to read) and has provided a selection of the presentations which we all learned from and thoroughly enjoyed. Personally I found them absolutely fascinating. I would like to just talk briefly about our two breakout sessions in the afternoon. These were an opportunity for all patients to come forward and hear what CCHA has done and hope to accomplish in the future. Your input is encouraged and is invaluable to the organization as it continues to grow and represent patients with CHD across the country.
Suzanne of Vancouver and Symon of Montreal/Toronto were introduced as they are starting to set up CCHA Chapters in both BC and QuebecNova Scotia, and hoping to start a Maritime Chapter, we will almost be a National organization. Once we get Alberta respectively. With me moving to on side the dream will come true. I intend to help Suzanne and Symon as best I can but it is clear that they will need the total backing of their respective clinics if they are to succeed. These new Chapters and their local efforts will help create awareness of adult CHD across the country. But I want to make it perfectly clear that CCHA wants the parents of young children to become involved so they know there is a support group out here for them. That is why I want our mentoring and “teens in transition” ideas considered and hopefully integrated with whatever programs the professional care givers have in place. After all: “We’ve walked the walk!”
Awareness is a huge issue and undoubtedly our next, battle which will be an ongoing exercise. We encourage the use of the CCHA forum, Facebook, Youtube and any other electronic mediums available to interact with each other.
Colleen from Ottawa suggested that she start a student CCHA chapter within the university. I think university chapters across Canada would create an incredible movement and total awareness. Students are so full of ideas, enthusiasm and think so much outside the box with little regard for the status quo that I find this truly exciting and would like to work with Colleen in helping create a student movement. If anyone else has some ideas how we can help her it would be great.
Francine, President of the Windsor/Essex County Heart Defect Society [An Affiliate of CCHA] is probably the most feisty person I know. As she awaits a heart transplant, she heads up an organization which is incredibly active. Last year they had a "Walk and Roll" event which raised over $7,000.00 for them and she has another coming up this fall. It would be great to take Francine's lead and start this up City by City, Town by Town, and Village by Village across the country. Anyone up for the challenge? I'm sure Francine will give you lots of advice. Francine also was successful in having the city of Windsor declare February 14th “Congenital heart Defect Day”. Congratulations Francine! My local MPP, Dr. Helena Jaczyk, Parliamentary Assistant to the Minister of health has assured me that she will be preparing a motion in the fall to have the Province declare February 14, 2009 to be declared “Congenital Heart Defect Day” across the Province....and I will keep reminding her of her promise until she does it. If more of you wrote to your mayors and councillors and legislators this could also be a National Day (contact info is available here). It really isn't that hard...all it takes is an email ....perhaps Francine and I can put some wording together so it will be easy for you to just 'Cut and paste" and send.
Doug Fraser, a fellow patient and employee of RIM in Kitchener has kindly offered to have an article placed in his company's newsletter, which goes to over 10,000 employees so Ted and Shelagh are working on that. What a great opportunity to reach out to so many people. Thanks Doug!
So, we have our work cut out for us but we each do a little we do adds up and eventually turns in to a snowball. Gary invited us to speak to his Lions Club and John represented us and gave a great speech and at the end of it they presented him with a cheque for $300.00 to go to CCHA. Again, thanks John, and that's what I mean about each of us doing a little. It makes a huge difference.
As I said in my opening remarks at the conference: "Our hearts are our passion and even though they may be weakened they have made us stronger and better people. I'm so proud to be one of you and incredibly honoured to represent you."
My e mail has changed since Sympatico does not go east of Quebec so my new e mail is: johnmaceachern2@gmail.com I would love to hear from you with any ideas.
Take care!
John
John MacEachern
President CCHA
