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Kawasaki |
Once again, procrastination triumphs, and a newsletter scheduled for February makes it out at the end of March. How's this: I'll get No. 4 out now, albeit short and sweet, and issue No. 5 (also known as Volume 2, nO. 1) will come out early. Believe me?
Of course, I can lay partial blame on the failure of technology -- or at least on the failure of one computer hard drive I know. Fortunately, I lost none of the group mailing list (which now has topped the 150 mark) or Internet Web site files; an earlier near-disaster had convinced me to save extra copies. But I did lose every single piece of Kawasaki electronic mail I had lovingly (compulsively?) saved, and all e-mail addresses. If any of you computer types have a chance, I'd appreciate a note so I can start reconstructing the e-mail address book:
The high points of my past few months included receiving a letter from Sue Davidson, coordinator of a support group based in England. Her son Gary had Kawasaki Syndrome in 1992: The disease wasn't diagnosed until Day 16 and left him with aneurysms and occasional angina. If anyone here has a similar experience with angina, Sue would love to hear from you. Her address: 13 Norwood Grove, Potters Green, Coventry, CV2 2FR, U.K.
The membership in the U.K. group has grown to about 400, she said, taking off particularly in the last year because of a Kawasaki program on the science series Panorama that included the group's address.
Maybe this combined population of a few hundred people could do a little work together. Michelle Arevalo of Methuen, MA, suggested writing to publishers of baby books to get this disease a mention. Great idea! Here are addresses of a few books that are lacking (check yours):
"Dr. Spock's Baby and Child Care," Penguin Books USA Inc., 375 Hudson St., New York, NY 10014.
"What To Expect the First Year," Workman Publishing Co. Inc., 708 Broadway, New York, NY 10003 (Kawasaki IS mentioned in "What To Expect the Toddler Years.")
"Caring for Your Baby and Young Child," (by the American Academy of Pediatrics) Bantam Books, 666 Fifth Ave. New York, NY 10103.
She also wondered whether there was some way we could raise money for research. There was a benefit fun run held last year by Children's Memorial Hospital in Chicago; I'll explore whether we can contribute to a future event. And I'm scratching around the American Heart Association, the National Organization for Rare Disorders and any other group I can think of for leads to research foundations. Any ideas from you folks would be welcome, too.
Vicki, Dale and Juliette
A symposium on the management of Kawasaki Syndrome is being planned for May 10, 1997, in conjunction with the World Congress of Pediatric Cardiology and Cardiac Surgery that is being held that week in Honolulu, Hawaii.
The course, to be held at Kapiolani Medical Center for Women and Children, will include: the incidence of the disease throughout the world; theories of its cause; atypical cases and other diagnostic dilemmas; and treatment of the acute disease and long-term therapies.
The event will include "hands-on" echocardiography sessions, allowing participants to perform tests on patients with varied coronary artery lesions. Other techniques to be covered: electron-beam tomography, angiography, intravascular ultrasound and nuclear scintigraphy.
The World Wide Web site for the Kawasaki Families' Network has been reorganized (thanks to Greg Wiles, who's a good friend and even works for free!). It now includes a "Families" page that can serve a purpose for many of us, whether or not we use the Internet.
The page is a listing of any member who wishes to be listed by electronic-mail address (where available) or by regular mailing address. This may be particularly useful for families who have had a particular experience and who want to connect with others in similar circumstances. For all those listed, we include at least the city or town of residence (in case someone searching the Web is looking for someone in their vicinity) and a few details about their experience with the disease. (Check out the listing using the link at the bottom of this page.)
Anyone who wants to be listed, please let us know, by mail (Kawasaki Families' Network, 46-111 Nahewai Place, Kaneohe, HI 96744) or by e-mail:
Those with e-mail accounts might consider signing up for a new Kawasaki discussion "list" established through the University of Hawaii computer system.
You subscribe to the list, and then you receive all e-mail that other subscribers send to the list's special address, kawasaki-l@hawaii.edu. (Note: That's a small L in "kawasaki-l" -- not a capital I or a 1.)
And if mail gets heavy, you can "unsubscribe," either temporarily or permanently.
Here's how to sign on:
1. Type the following into the body of an e-mail message: SUBSCRIBE kawasaki-l FIRSTNAME LASTNAME
2. Send the message to: listproc@hawaii.edu
You soon get a message with further instructions, but basically, that's it. As always, questions are cheerfully accepted at kawasaki@compuserve.com.
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We welcome your suggestions, too. Please notify us by e-mail if you have any questions or ideas, or if you would like to add your name to our mailing list (and leave your mailing address in the message).
Send comments to: kawasaki@compuserve.com We'd love to hear from you. Let us know if it is OK to list you on our "Families" page.
Web design by Greg Wiles
Illustration by Marcel Isler