Wednesday, January 1, 2014

26 Days of Kawasaki Disease Awareness: Day 1





Happy New Year! Today is January 1, 2014, which means that Kawasaki Disease Awareness Season is officially here.  On January 26, 2011, the Kawasaki Disease Foundation declared the day National Kawasaki Disease Awareness Day and sent a declaration to the US Congress requesting the day officially be recognized.  This particular date was chosen because 50 years earlier, on January 26, 1961, Dr. Tomisaku Kawasaki discovered a pattern of symptoms that would later be named Kawasaki Disease.  

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.  So let's get right to it!

If you are looking for information on Kawasaki Disease, click here!

Day 1: Help make 'National Kawasaki Disease Awareness Day' officially recognized at the local, state, and national levels.

There are many people who have never even heard of Kawasaki Disease let alone know it had an awareness day.  The more people, businesses, and organizations we can get to recognize NKDAD the more people will learn about this rare disease.  My examples are based on US geography and politics, but would definitely transfer to your country's differences.  

Health Care Facilities

Start with the hospital that treated your child and ask them to write a press release in which they officially recognize the day.  Make KD pamphlets, brochures, posters, stickers, and buttons available to hospital staff.  

Children's Hospital Colorado issued this press release recognizing the 3rd annual NKDAD.  They used the article to list the symptoms of KD and to provide more information about their KD resources.  

Honolulu's Kapi‘olani Medical Center for Women and Children issued an extremely informative press release for the 1st National KD Awareness Day which included history, basic information, and a timeline of events.  Hawaii was the site of one of the first ever diagnosed cases of KD in the United States.  

Rady's Children's Hospital in San Diego, an ever-present KD awareness supporter, held a media event where survivors shared stories and raised awareness

Local Businesses and Organizations

Contact your local businesses about celebrating NKDAD by donating a portion of their sales for the day to a KD charity or setting up a charitable event.  

Reproductive Wellness in San Diego held a raffle to benefit the KDF.   

Stuff Etc. in Davenport, Iowa gave everyone who donated a dollar to KDF  20% off their total.

Politicians

Write a letter or email to your mayor, county commissioner, or governor asking them to officially declare January 26th National Kawasaki Disease Awareness Day.  This can and does work!

Commissioners in Lewis County, WV declared the day in 2011, prompted by one of the commissioners whose son had the disease.  They did it again in 2012 and reported the Governor would likely follow suit.  

The Governor of Alabama, Robert Bentley, declared January 26th National KD Day by issuing this official proclamation in 2013.  

Congress

When the Kawasaki Disease Foundation declared the first day of awareness in 2011, an official declaration was sent to the United States Congress asking for a resolution to be passed.  Write letters to your Senator and House of Representatives members asking them to bring this issue back on the table.  Tug on their heart strings by telling them your personal KD story and urge them to revisit this important resolution.  A vote that could take one day of their lives could save the hearts of countless children.  

You can view the resolution that was sponsored by former Virginia Senator Jim Webb at OpenCongress.org, which gives details about each resolution before congress.  Here is the KD resolution.  This website makes it extremely easy to send your state's representatives an email telling them how important this issue is to you.  On the right side is a button of support with the title "Send Your Senator a Letter."  Click on the support button, fill in your zip code, and OpenCongress will give you a form to send directly to your representatives.  They even give you an example form letter that you just have to personalize with your name.  

The President of the United States

Write a letter to President Obama asking him for a presidential proclamation.  According to this article, it is as simple as asking and somehow catching the president's ear.  This presidential proclamation database shows just how often it does happen.  A presidential proclamation is a statement issued by the president on a certain public event or issue, but only has force of law if congress gives authorization.  Observance of certain days in order to raise awareness falls under the category of presidential proclamation.  

The White House's official correspondence page states, "President Obama is committed to creating the most open and accessible administration in American history. That begins with taking comments and questions from you, the public, through our website."  If President Obama receives enough calls, letters, and emails about KD, maybe he will consider our plea.  Per the website, the best way to contact him is through this email, but you can also call or send a letter to:

The White House
1600 Pennsylvania Avenue NWWashington, DC 20500

Go to this website for more information, phone numbers, and tips on how to get your letter read by the president.  

If you have any more ideas on how to get our day officially recognized, please leave them in the comments or come on over to Desperately Seeking Kawasaki on Facebook and join the conversation.  Come back tomorrow for Day 2!













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