Winter 2015 Newsletter 
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Welcome!

Welcome to our first newsletter!  Thank you for your interest in learning more about Kawasaki disease and what we've been up to at Kawasaki Disease Canada.   This quarterly publication will inform you about the latest developments and news, as well as sharing our progress towards our strategic priorities.

On January 26, 2015, Kawasaki Disease Awareness Day, we launched our website and were fortunate to garner considerable media coverage about it and our new organization.  Then on February 15, 2015, we made the front page of The Toronto Star!  In case you missed it, here is a link to the article. 

The response has been overwhelming. Our website, kdcanada.org, has had visitors from 47 countries 0n 6 continents!  This is phenomenal and we could not have done it without you!

Thank you for all your efforts in helping us spread our message of awareness and early detection.

To learn more about how our message is being heard, read the story below entitled "The Impact of Spreading Awareness".

Together, we can save a child's heart.
 
Elizabeth Heald
President, Kawasaki Disease Canada 

 

Who are we?

We are Canada's first not-for-profit organization dedicated to supporting individuals and families affected by Kawasaki disease, educating the health care community and the public, and supporting Kawasaki disease research. Our ultimate goal is to support the eradication of Kawasaki disease. 

Our Board of Directors are a passionate group of volunteers who are working together to deliver Kawasaki Disease Canada's mission, vision and goals.  Click to learn more about us.


Our Advisory Council serves as a resource to Kawasaki Disease Canada by making recommendations to the Board of Directors.  Members of the Advisory Council share in our mission by providing our organization with their professional and technical expertise, their diverse knowledge and experience, and their connections to local, national or international resources, colleagues or peers.  Click here to read about our advisors. 

 

The Impact of Spreading Awareness

Two days after the first media stories were published about Kawasaki Disease Canada, we received an amazing, heartwarming message via our Kawasaki Disease Canada Facebook page.  The author of this message has given us permission to share it with you.  Please read on...

"I'm hoping this message can reach Elizabeth Heald.  
 
Elizabeth, I wanted to thank you and let you know that your goal to help save lives by bringing awareness to Kawasaki disease is already becoming a reality!
 
I work in a doctor's office as a medical office assistant.  On January 26, we had a very sick little girl come in to see the doctor.   She had been ill with fever for days, redness in both eyes, swollen lymph nodes, had sores on her tongue and lips and now had developed a rash over various parts of her body.  She had been seen at walk-in clinics twice and even the hospital, each time being diagnosed with viral or bacterial illnesses.  The doctor examined her and also came to the conclusion that her symptoms presenting were due to an secondary strep infection and gave her a prescription with instructions to come back in a few days to be reassessed.  
 
That evening, while at home I was browsing the Kitchener Record website and came across the touching article about your son Dylan and your organization.  I had heard the name Kawasaki disease before, but really knew nothing about it.  As I was reading the symptoms listed, the little girl from earlier in the day immediately popped into my mind, and I thought wow, that sounds exactly like her, but then dismissed it...this is such a rare disease, she just has an infection.
 
The following day at work, the parents of the little girl called, needing to see the doctor right away as the antibiotics were not working.  When I saw her name on the schedule, your article came back to me and I told the doctor about it.  All of her symptoms fit exactly and he immediately looked up the disease to refresh his memory on the proper treatment plan and protocols.  Sure enough, when the little girl came in she was still just as sick, if not more so, and the doctor referred the family to the ER with a note for the doctor to rule out Kawasaki's.
 
Today we got a report back that she has been admitted with Kawasaki's and is undergoing treatment as I write this.  I wanted to let you know how important what you are doing is and that you've already potentially saved this little girl's life!  If not for your article, she most likely would not have been diagnosed.  This is a disease that is touched upon briefly in medical school, along with thousands of other rare diseases.  It is not incompetence on the doctor's part when they misdiagnose this disease, it is just lack of awareness, or the need for a reminder to consider it, as it presents so much like a  common illness.  Thank you, and keep up the amazing work!"

Postscript:  We received a follow-up message a week later that "the patient is now discharged from hospital and doing great! Will have follow up testing for a while, but is otherwise fine."

                                                                                                                                                                      
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Outreach & Education

We are excited to begin our outreach and education programs.  These programs are in the form of presentations to healthcare professionals and distribution of our posters and awareness messages through schools and community centres. 

If you would like to help distribute our materials, or have other ideas, please email us.

Research

The International Kawasaki Disease Symposium took place on February 3-6, 2015 in Honolulu, Hawaii.  Click to review the video with highlights of the Symposium.

We will continue to share more information about the Symposium and other research being conducted around the world. 

Visit the "News" page on our website often.

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Support

It is a priority of Kawasaki Disease Canada to support families and individuals dealing with Kawasaki disease.  Many of our support volunteers are parents of children who have had Kawasaki disease and are able to provide support based on their own personal experiences.

If you would like to be matched with one of our support volunteers, please click here.

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Volunteers Needed

We have accomplished a lot since our first meeting on February 14, 2014 and are ready to move into the next phase of our strategic plan.  In order to to this, we need your help. 

Please consider helping us by becoming a sponsor or volunteer.

We have a number of priorities and committees that may interest you:
  • Finance
  • Fundraising
  • Marketing, Communications & Public Relations
  • Outreach & Education
  • Research
  • Support Programs

If you can help or just want more information, click here

 

Thank You to our Sponsors

We are very grateful to our sponsors for their generous support. 

We would also like to acknowledge the Kawasaki Disease Foundation in the United States for their mentoring and advice, and for allowing us to use their poster design and images.




Legal Services donated by Gowling Lafleur Henderson LLP








 

Logo Design donated by Alfredo Galvan   

 










 

Website Development donated by Bill Stone  

 

 

 

Iconic Group provided a discount on their website development services  





Posters donated by Robert & Matt Moore at The Print Shop












Proceeds of Fundraising Event
donated by Kim & Greg Barnes and the Bocce Ball Crew
Kim Barnes, with Elizabeth Heald
& Warren Galilee


Contact:
Email us at Kawasaki Disease Canada News to provide us with your feedback about this newsletter!