My Introduction

[Guest guest]

Hello to all of you. I was referred to this group by someone from the CMTA

message board. I am 31 and had CMT symptoms since I was born but not diagnosed

until my late twenties. Gotta love doctors!! I spent my childhood feeling

like a " loser " because I couldn't do the things the other kids did while the

doctors said there was no reason for it. The diagnosis was a blessing for my

self-esteem. It also put me on a mission.

I am an actress in Los Angeles and I contacted the CMTA . . . after a few

meetings they named me their spokesperson. Unfortunately, they have done little

in the lines of publicity and my manger can only do so much while working on

" regular " life as well. I taped an episode of a NY only talk show, The God

Squad, that aired today. I want to do more . . . I want to speak out more. I

want to help the children who have CMT and also create enough public awareness

to drive the search for a cure. I am currently developing a sitcom and the

lead character will have CMT. I incorporate it as much as possible into my

work.

I'm also blessed to have a man in my life who is completely unfazed by the

disease. As much as I try to feel bad about putting him into this life he

reminds me how it doesn't matter at all to him . . . and he shows me that every

time we are together. He is a musican/actor and also my partner for the show we

are creating.

I did not know this group existed and it looks like a great place. If any of

you have any thing that I could help with just let me know. I am also trying

to get enough people to contact Oprah so she does a show about CMT. My

manager has connections there but so far nothing. Send emails . . . write her .

..

.. let's get our stories out there!

Thanks for you time,