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Leber's Congenital Amaurosis Newsletter Update

By Kit Looper, Grandmother, Canadian, Texas

I am a grandmother of two small granddaughters with Leber's Congenital Amaurosis (LCA) and have been working steadily to start an LCA newsletter. The Newsletter is still a work in progress, and unfortunately, had to be put on hold for awhile, but things are finally coming together. Even though I haven't been able to work on the newsletter during this 'off' time, I have 'met' some very interesting LCA parents, and found this 'network of families' expanding. They include among others, Janet Gresham, in Selma, Alabama, who has experience producing a newsletter on handicapped children, and offers her help in getting our 'show on the road' for LCA. Janet and I are fellow Alabamians and have established a great working internet friendship, sight unseen.

Also, Brenda Sutherland of Ontario (Canada) contacted me, and she is working with and through The Hospital for Sick Children (HSC) in Toronto, to set up a registry of LCA parents in Canada. They are eager to contact any LCA parents in the USA we might reach through a newsletter, to give them an opportunity to join their registry, too. Brenda is a funny lady, and introduced me to ICQ on the internet, so we sometimes have animated, two-way, 'visual conversations' on screen.

Last, but not least, it seems we are now in the fast track toward global possibilities--about half way around the world, to be specific. Cheryl Marley, a British citizen, lives in--are you ready--Saigon, Viet Nam, and has been spurred to begin her own website for Families of LCA Children. When Cheryl and I first 'met' on the internet through a list-serve, she was full of enthusiasm, energy, and frustration-- and had a lot of questions on what she could do to make a difference. Eventually she found the answer--her Leber's Links webpage. I had to leave town for about 10 days last summer, and when I got back, Cheryl Marley had hit the World Wide Web bigtime. She literally taught herself how to create a website in just a few days and went online! She has had over 1000 hits in about three months.

I include my latest email from Cheryl, and encourage you to support her efforts. And for the clockwatchers among you, Cheryl's time is exactly twelve hours (halfway around the clock,) from Texas (Central) time. Noon here, is Viet nam's midnight. I always email her late at night, my time, just as she is greeting the sun in Viet Nam. Works out very well, as I then have email from Cheryl waiting when I get up next morning. Here is a bit of her personal email to me about her "Leber's Links" project:

"I am continuously working on [the webpage] and have lots of plans for additions in the near future. Please publish the URL which is: <http://www.freeyellow.com/members4/leberslinks/index.html>. Also, my email address which is cheryl@hcm.vnn.vn. Here is what I usually tell people who ask about the page---Leber's Links: (Leber's Congenital Amaurosis, Blindness and Visual Impairment) - A new web site set up by the parent of a young child diagnosed with the genetic eye disorder, LCA. Fast becoming the central arena for LCA families and professionals to source and share information on the disorder, blindness and other associated issues. Updated regularly, lots of links to LCA articles and information, visual impairment and related web sites. Includes the international LCA register."

Cheryl has kindly asked me to be a contributor to her effort. If you have LCA in your family, and are reading of the Texas LCA Newsletter for the first time, please contact me so I can add your name to the mailing list. It will be available both on email and through the postal service. Research is proliferating on this rare genetic condition--LCA--and we hope to bring you the latest in the medical field, and put you in touch with other LCA families for support. Contact me, Kit Looper, at 810 Summit Avenue, Canadian, Texas 79014; email: kit@hhtx.com or kit@pan-tex.net; or call me at (806) 323-8500.

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Go to Fall 1998 Table of Contents.