About The Benign Congenital Hypotonia Web Site

Calling this "The Benign Congenital Hypotonia Site" seems a little bombastic, but if it's the only such site in existence, who's going to contest the title? Such are the rewards for having a rare disability.

Who created this web site?

My name is Marty (or Martin), my digital pseudonym is "The Vulcan" (or just "Vulcan"), and I created and maintain this web site. I was born with hypotonia, diagnosed in infancy with "Benign Congenital Hypotonia", and at age 31 (after creating this web site) diagnosed with Nemaline Myopathy.

Advice For The Naive Or Litigious

Information on this web site should not be assumed to be totally accurate or complete. I do not have any training, education, or certification regarding anything medical. You should always consult your doctor when making any medical decisions.

History

Until I put up this web site, I had lived my life without ever having met anybody who had a benign congenital hypotonia. When I got my first internet account in the spring of 1996, I did a search on "Benign Congenital Hypotonia" and found nothing. During the summer of 1996, shortly after I obtained my first internet account and figured out how to create web pages, I put up my Planet Vulcan web site. In the spring of 1997, I joined two Muscular Dystrophy e-mail lists, which promptly lead to the writing of "Growing Up As A Martin". It didn't occur to me until October of 1997 that if I were to put up a site dedicated to BCH it would be the only one in the world, and probably get a top hit on the search engines. If I couldn't find them, I should at least enable them to find me. So I put the Benign Congenital Hypotonia site up. Within weeks I was hearing from people wanting to know more about me and to talk to other parents and such. After hearing from more than half a dozen people, I contacted my ISP's administrator and asked if I could start a mailing list. And so, in February of 1998, the Benign Congenital Hypotonia e-mail list was born. On average, we've added another member or two to the list every week since. The discussion really got going in June, and became an e-mail flood by August. In November, a parallel announcement list was created to allow people to stay informed without being flooded.

Suggestions or Comments?

If you have suggestions or comments, or would like to contribute to this web site, please drop me a note! All brainstorms are welcome - I have a brain umbrella.


The Benign Congenital Hypotonia Site
Contact People
19-Dec-1998