TSCTalk Logo  
where tuberous sclerosis is the talk of the town...  
line decor
  
line decor
 
 
 
 

 
 

The History of TSCTalk

"TSCTalk was created in 1995. It was the first mailing list on the Internet dedicated to supporting families and individuals affected by Tuberous Sclerosis.

The TSCTalk Website was added a short time after the mailing list went up, to compliment the mailing list and allow us to have a place to have contests, share pictures, and post resources.

The inspiration for the mailing list and the website came from a single researcher in England who emailed me many years ago from my personal website (Lisa's TS Sites). That researcher told me that she sometimes forgot why she chose to be in the field she was in, but when she read my story she remembered why, and she thanked me for sharing. I never forgot that email and it gave me the idea to get people talking about tuberous sclerosis so word would spread and people would no longer look at you funny when you say those words.

I had no idea how many people had ts or if anyone would be interested in my story. My personal site was actually just a way for me to practice the html I was learning at the time (this was back in 1996, before the internet became popular). I didn't know what to talk about, so Pat (my wonderful husband) suggested I just write about something I knew about. Well, I knew about how I was affected with ts, so I wrote about that. I was very surprised when I began receiving emails from others with ts, who would tell me their story and ask for help. All I could really do was tell my story and direct them to the TS Alliance. I wanted to do more. I wanted a single place where people could gather and share their stories just like I did, and hopefully promote learning through sharing experiences. That is how the idea for the list came to be.

Thanks for stopping by! Be sure to visit my personal site and the TS Alliance website in your internet adventures.