Dean & Margot Schmiedge 8060 Struthers Crescent Regina, Saskatchewan Canada S4Y 1J3
Phone:	(306) 543-8715
Email:	margot@kabukisyndrome.com

Make a Donation

Please note that if you are making a donation on behalf of a friend of a child with Kabuki or a loved one who has passed away and are using PayPal please send Margot a separate email stating this. In this way I can send the family a card stating that a donation was made on their behalf!

For those that prefer to send via snail mail, send to:
Kabuki Syndrome Network
8060 Struthers Crescent
Regina, Saskatchewan S4Y 1J3
Canada

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KSN History

Kabuki Syndrome Network's history is still being written. It began when Margot Schmiedge and her family recognised the need for a support group for families with KS. Since that initial recognition, Margot has received valuable help and encouragement from many people in the development of the network. The following outlines that development:

• In March 1994, the Schmiedges' daughter, Tara, is diagnosed with Kabuki at 4 1/2 years of age.
• A year later, Margot & her husband, Dean, begin a search for other parents with children with KS.
• At the Schmiedges' request, their geneticist puts them in contact with four other families he has diagnosed, which leads to several meetings.
• To help promote awareness among geneticists of this new, loosely organised network of parents, a short article is published in two Canadian Genetics journals.
• The response to this article includes requests to submit the new group as an official 'support network' with various online directories such as the Canadian Directory of Genetic Support Groups and Medical Genetics, University of Kansas.
• Suddenly, with 'internet speed' Margot finds herself receiving contacts from all over the world requesting information about both KS and the possibility of further networking.
• November 1997 brings the discovery of another developing network in The Netherlands (Netwerk Kabuki Syndroom), with whom close contact has been maintained ever since.
• As requests for information increase, it quickly becomes apparent that further organisation is required.
• The first project for KSN is undertaken, the compilation of a comprehensive list of scholarly journal articles on KS as well as a dictionary of medical terms.
• As a result of many requests for the contact information of other families with KS, the Family Directory comes into being.
• In June 1998, the first Family Directory is sent to all those who have agreed to be listed in it.
• In Fall 1998, the groundwork for this website begins.
• In April 1999, KSN begins producing a newsletter to keep the membership up-to-date on the latest happenings within the network as well as news about Kabuki syndrome.
• May 1999 sees the inception of the KSN mailing list, which provides a forum of discussion about Kabuki-related issues for families and interested medical/educational professionals.
• In Nov 1999 KSN's first newsletter is mailed. The editor is Dawn Rocco from California. She has a degree in Journalism/Advertising. Production costs have been donated by Dawn's parents, Mike and Grace Garrett who own Best Impression Printing in Merced, CA.
• In Dec 1999 KSN becomes incorporated in Saskatchewan. The directors are Lois Ross (from Calgary, Alberta), Jen Morton (from Calgary, Alberta), Dean Schmiedge (from Regina), and Margot Schmiedge (from Regina).
• Maureen Loftus, a member of KSN, designs a comprehensive questionnaire. It is sent to members in June 2000. The resulting data will be entered into a database, which will then be available to families or professionals who request it.
• In Sept 2000 KSN becomes a charitable non-profit organization within Canada. This gives us the ability to issue income tax deductible receipts to Canadian donors.
• Due to family commitments, Dawn Rocco 'retires' as editor during spring of 2003. We would like to thank her for a tremendous job done! We welcome our new editor, Heather Johnson from Charlotte, North Carolina.
• In Oct 2005 Margot Schmiedge and Heather Johnson produce KSN's first brochure. We would like to thank Tim & Debbie Whelan for their contribution of its graphic design.
• In 2007 Mike Garrett who donated all materials and printing of our first newsletter editions has gone into "kabuki-journal-retirement". A huge thank-you for your years of generosity! Saskatchewan Government Insurance, employer of Dean Schmiedge has generously offered to take up the reins for the next few years. Heather Johnson is busily learning the ropes of KSN's new desktop publishing software!

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Acknowledgements

Our logo, which you see on the right, comes from the Dutch Netwerk Kabuki Syndroom. It was designed by Jos Vergouwen, the contact for the Dutch group. Thanks to Netwerk Kabuki Syndroom for allowing us to use the logo. Jos describes the logo as follows: "The logo is derived from the first Japanese character sign of the word Kabuki syndrome. The first thing you see is the elegant letter K. If you look more closely, you see a person standing with both arms outstretched, which symbolises the invitation to network with one another."

Thanks also go out to Ed Zwart, Margot's brother, for his help in the design and construction of this website.