Testing CMT 1A

[Guest guest]

Heidi,

Keep at it. You deserve a honorary degree for your advocacy!

Here's the MDA Headquarters address and 800 phone number:

Muscular Dystrophy Association - USA

National Headquarters

3300 E. Sunrise Drive

Tucson, AZ 85718

(800) 572-1717

The general email address is mda@... - then write

specifically to these men:

Ross is the MDA President and Chief Executive Officer

Fred Stecker is the Special Assistant to the President.

Might as well start at the TOP!

Here's another contact for you - Tara Wood. She is a writer for MDA's

Quest (she did the story on me last summer). She might be a good

resource for you to help direct your letter. Her email is

twood@...

Funny thing, since many people from time to time have reported

problems with MDA, I tried to sign up with my local office last

November. Received a phone call with tons of papers to complete and

of course an invitation to their Christmas Party. I had not made an

appointment, nor was I going to, until I found out about CMT testing

for ME. My local MDA office did not know if I could be DNA tested and

contacted the main office in Tucson, who said " No " , they would not

DNA test me. I explained my diagnosis was done at a time before the

testing was available, and would like to be tested. No. No. No. I

asked " why " ? My local MDA rep said " because you have already been

diagnosed " . I argued this DNA test was very important to me and my

health, still got No. No. No. Also got " but we are so looking forward

to meeting you at the Christmas Party " .

Give me a break. I am much older than your baby (lol) and even I

can't get DNA tested through MDA. On top of that their sign up forms

wanted all kinds of personal information, like SS# for example, which

I said I would be happy to provide in a more 'secure' environment.

The clinic director emailed me and asked for my phone #, said she

wanted to 'ask me something' then never followed through.

When tests come out for all the Type 2's, I will have myself tested

privately, even if I am 83 year's old! lol

Stay on this, keep up the good fight. I applaud your efforts.

~ Gretchen