Thursday, January 23, 2014

26 Days of Kawasaki Disease Awareness: Day 23





To commemorate 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:
Day 6: Contact news outlets about running a KD story.
Day 7: Decorate your home and car windows with KD awareness.
Day 8: Participate in a KD Clinical Study
Day 9: Share Kawasaki Disease themed infographics and memes.
Day 10: Organize a 5K run for Kawasaki Disease.
Day 11: Get your community involved in KD awareness.
Day 12: Hand out heart lollipops with KD information.
Day 13: Start or join a Kawasaki Disease support group.
Day 14: Buy, make, and wear KD awareness.
Day 15: Organize a charity golf or mini-golf tournament for KD.
Day 16: Organize a local blood drive for KD and donate blood.
Day 17: Get your child's school involved.
Day 18: Make a KD inspired float for a local parade.
Day 19: Organize a charity sporting event for KD.

Now let's get to today's idea:

Day 23: Attend a Kawasaki Disease Parent Symposium.

The first US Kawasaki Disease Parent Symposium took place in San Diego, California in November of 2009.  Dr. Tomisaku Kawasaki - the doctor who first recognized the disease - was in attendance, along with KD experts Dr. Jane Burns and Dr. Adriana Tremoulet.  It is the only symposium that has been completely uploaded to Youtube (that I've found) and you can view it here.  The KD program at University of California at San Diego has presented a symposium every year since 2009.  

Another Kawasaki Disease Parent Symposium was held in San Jose, California in 2012.  This symposium featured Dr. Michael Portman from the KD program at Seattle Children's Hospital and KD specialist, Sadeep Shrestha, from the University of Alabama-Birmingham. In 2013, the Seattle Children's Research Institute held its own KD Parent Symposium with Dr. Portman.   

The Kawasaki Disease Foundation in India has also held KD summits for medical professionals, students, and parents.  

These symposiums are a parent's best chance to hear about the latest Kawasaki Disease research straight from the experts' mouths.  It is one of the only opportunities many will have to meet these KD experts in person.  These doctors come equipped with the latest statistical data and directly address the audience of KD parents and survivors.  There is also a question and answer period when people can get answers to their most pressing questions.

I haven't been able to attend one of these events, yet, but I've had the pleasure of talking to some mothers who have attended in the past.  Their experiences show just how much awareness can be spread by attending:

"I personally think they are important because you get to learn about all the latest KD research and developments directly from the specialists in a way that you wouldn’t get just by reading about them. In other words, at the symposiums the specialists explain what they are learning about KD via their research in a language that is easy to understand, and you get to ask any questions you may have. What I get out of attending is not only a very educational experience in that it helps me keep up to date with KD but it also allows me to meet other parents who have gone through what we went through, which gives me peace of mind about the unknowns of KD through the sharing of our kids stories and updates on their health." — Vanessa Gutierrez


"The symposium is a summary of the new findings for the year in KD. Research, budget cuts, discoveries, long term research and more. I have gone two years in a row and I plan on going again this year. We get a lot of info from multiple sources in any given day. The symposium allows you to hear it from the people on the forefront of research." -- Dana Aleman

Have you attended a KD Parent Symposium? Tell us about it! And come back tomorrow for day 24 of 26 days of Kawasaki Disease Awareness.  







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