Re: looking for friends with CMT

[Guest guest]

Hello ,

Well, you've come to the right place. There are over 2200 friends with CMT here

at . Some of us have met face to face at a CMT conference last November, as

well as in ongoing support groups.

Gretchen

[Guest guest]

I have never went to anything like the conference.

[Guest guest]

I am going to the CMTA conference in allentown PA this coming Saturday. Anyone

else?

Lori

[Guest guest]

,

You might want to get the DVD from the West Coast conference last November.

http://www.charcot-marie-tooth.org/conferenceDVD.php you might also want to

see if there is a support group near you. Go to

http://www.charcot-marie-tooth.org/resources.php then put in your State, under

'Resource Type' choose 'Support Group Meetings in Selected States'.

If you happen to live in or near town, PA, there is a CMT conference on

Saturday May 30. More info at http://cmtausa.org/PFC_allentown2009.php

Gretchen

[Guest guest]

~

CMTA has a facebook page and there are people on it from all over the country.

If you don't have an account set up it is really easy and you can see what other

CMT'ers are doing. You should check it out.

I went to the West Coast conference last November and meet alot of CMT people.

It was very informative and alot of fun meeting all the unique people that share

CMT. It was great to meet people that have CMT in common with me. I used to

think I was the only one in the world with this challenge and through this site,

the conferences and support groups I now feel that I am a part of something very

special.

Las Vegas

[Guest guest]

,

Send me a link to Facebook.

[Guest guest]

,

Try contacting the MDA in your area. I believe the closest one is the MDA

offices(s)

1400 Florida Avenue

# 106

MODESTO, CA 95350

Primary: (209)578-1757

Primary Fax: (209)578-1783

Email: modesto@... or try the MDA Health Care Services Coordinator:

Chastity (916)921-9518 CMadison@... hopefully she can put you in touch

with some people that have CMT.

MDA clinic(s) serving the Modesto area:

University of California at Medical Center

Dept. of Physical Med. & Rehab.

4860 Y Street, Ste. 1700

Sacramento, CA 95817

If you are able to drive - this would be a stretch but worth it - but there are

2 support groups in No. California that would welcome you at their meetings. One

in San Fran. the other in Sonoma. Also MDA has MyMDA where you can meet others

in the CMT area. http://mymda.mda.org/_CMT-Community/group/90134/84464.html If

you're up for a longer 'road trip', you are most welcome to join us on June 28th

for a Summer Social Brunch in Solvang, CA. Email me and I can fill you in on the

details and give directions.

Facebook is http://facebook.com online friends is one thing, the real fun, for

me, is meeting people in person. Support groups, conferences, and local contacts

are all there. I have also met many people with CMT traveling through my area.

To have friends, one needs to be a friend.

If you have questions about CMT or want to know more about each one of us, let

us know. is comprised of people from 30 countries, and is full of hope and

inspiration.

Gretchen

[Guest guest]

I tried to send an invite to but it was blocked by

facebook. It's easy enough to join facebook.com and then just search for CMT, as

well as old friends that you've lost contact with. There are a lot of CMT groups

to join, I've been sharing with one called " Charcot-Marie-Tooth " that has people

from all around the world

participating.

O

[Guest guest]

~

Here is the link to the CMTA page on facebook.

http://www.facebook.com/board.php?uid=12765525026#/group.php?sid=593d7db9a4df7fd\

3e12634ffbd7970e1 & gid=12765525026 & ref=search

If for any reason this doesn't work do a search for CMTA at Facebook.com and you

will see it.

[Guest guest]

thank you

From: melissa adams <adams35@...>

Subject: Re: looking for friends with CMT

Date: Tuesday, May 26, 2009, 2:19 AM

~

Here is the link to the CMTA page on facebook.

http://www.facebook.com/board.php?uid=12765525026#/group.php?sid=593d7db9a4df7fd\

3e12634ffbd7970e1 & gid=12765525026 & ref=search

If for any reason this doesn't work do a search for CMTA at Facebook.com and you

will see it.

[Guest guest]

i found it

From: Oltmann <joltman1@...>

Subject: Re: looking for friends with CMT

Date: Monday, May 25, 2009, 5:33 PM

I tried to send an invite to groups (DOT) com but it was blocked by

facebook. It's easy enough to join facebook.com and then just search for CMT, as

well as old friends that you've lost contact with. There are a lot of CMT groups

to join, I've been sharing with one called " Charcot-Marie- Tooth " that has

people from all around the world

participating.

O