Wayne State visit

[Guest guest]

Hi Tammy,

I have brought my son, who is now 15, to Wayne State's CMT clinic

several times over the past two years. The experience has been

extremely satisfying and informative. Shy's team is very compassionate and

knowledgeable. I also found that Dr. Shy is great with kids of all ages,

empowering them to achieve their dreams, despite their CMT. In my experience,

the discussions and conversations are done with great care and thoughtfulness.

If there are any times that you do not feel comfortable speaking about a certain

topic would your kids present, they can go out in the waiting room or down to

the cafeteria for a snack. His team is pretty flexible and understanding.

However, the day is extremely long and tiring, especially if you are

dealing with jet lag - at one point, during a break, Yohan went in to

one of the examining rooms and took a nap. So bring something to do in

your spare time between appointments and try to relax. I would also

suggest that you write your questions down before hand so that you do

not forget anything in the moment. Please let me know how it goes.

Since it is a CMT clinic, neither my son nor I have ever felt more

understood than in Detroit, as none of the practitioners see CMT as

rare, mystifying, scary or puzzling. We both felt welcomed and well

cared for.

On this note, I would like to announce that I am currently planning a

CMT conference for Saturday, November 8, 2008, from 8:30 a.m. to 5:30

p.m. in Palo Alto, California. Dr. Shy, his genetic counselors, a CMT

pediatrician and the clinic's orthotist will all be attending and

presenting on CMT. There will be other CMT specialists as well as

representatives of the , CMTA, MDA and Shriners Hospital. If

you're interested in learning more about this upcoming conference, the

website:

www.a.org/paloalto <http://www.a.org/paloalto> , should be up and

running no later than tomorrow afternoon.

Good luck at Wayne Sate and please let us know how it goes!