Monday, January 13, 2014

26 Days of Kawasaki Disease Awareness: Day 13

To celebrate the 4th annual National Kawasaki Disease Awareness Day on January 26, 2014, I will be posting 26 ideas on how you can spread KD awareness in your own community and beyond - one idea per day until the 26th.  

Here are the past days:

Now let's get to today's idea:

Day 13: Start or join a Kawasaki Disease support group.

Ten years ago, it was extremely hard to find information on Kawasaki Disease and even harder to find support groups.  The internet and social media has changed all that; even though the KD community is small compared to other communities, it is now much easier to find support -- at least online.  Local KD support groups that meet in person are still a rare occurrence... but you could change all that!

KD support groups raise awareness for KD by bringing people together that share the same passion for this cause.  This shared passion will bring about a group motivation that could lead to many more chances to spread information.  Joining a support group will give you access to much more information about the syndrome, which you will then be able to share with others.  Another enormous benefit to joining a KD support group is the sense of togetherness and understanding that it will bring.  I hate what has brought us together, but I have been deeply moved and forever changed by my fellow KD Mommas and survivors that I have met along my journey.  I consider many of these people my friends. 

Here is a list of Facebook Kawasaki Disease support groups.  Some are more general and are for anyone who has been affected by KD while others are more specific and are for people from a certain region or who have lingering problems like coronary artery aneurysms.  Some are more active than others.    

  1. Kawasaki Disease  
  2. Kawasaki Disease Support and Awareness   
  3. Kawasaki Disease - Raise Awareness 
  4. Kawasaki In Canada (Open to Anyone)  
  5. Kawasaki Disease Support Group 
  6. Kawasaki Support Group UK
  7. Kawasaki...not the motorcycle... The Disease
  8. Kawasaki Disease Support - Children with Aneurysms 

There are also many Facebook Pages that are dedicated to Kawasaki Disease.  Some pages are for specific foundations or groups, others are dedicated to a specific KD survivor.  All are passionate about spreading KD awareness and are here to help give information and support.    
  1. Team Kawasaki Disease - AL  
  2. Isaiah's Kawasaki Disease Journey
  3. Kawasaki Disease Foundation 
  4. Kawasaki Kids Foundation
  5. Cooper 5K & Fun Run
  6. Don't STOP the BEAT 5k  
  7. Kawasaki Support Group UK
  8. Kawasaki Disease Foundation - Australia
  9. The Busey Foundation
  10. Vasculitis Foundation
  11. Kawasaki Syndrom Forum (German)
  12. The Wish of Innocents (KD Documentary)
  13. Kawasaki Disease Foundation Gala
  14. Kawasaki Disease in Saskatchewan
  15. North Texas Kawasaki Disease Group
  16. South Texas Kawasaki Disease Parents
  17. Kawasaki Kids Club
  18. Doenca de Kawasaki
  19. Quianu Robinson's Kawasaki Disease Awareness Page
  20. Prayers for Peyton Brown
  21. Prayers for Paxton
  22. Prayers for Rylee

Anyone who wants to can start a group or a page on Facebook.  A good way to try and start a local support group is to first start one online and see if you can reach people in your area who might be interested.  Contacting the pages and groups above about your new page will help your message spread faster.  You can also take more local routes like putting ads in your local newspapers and magazines or put up flyers at local business bulletin boards.  

Have you found support in a Kawasaki Disease group? Tell us about it! And come back tomorrow for day 14 of 26 days of Kawasaki Disease.

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