Re: CMT Awareness Revs Up Through Support Groups!

[Guest guest]

and ,

CMT DOES seem to be the least talked about disorder around. Any of us

that have it seem to keep it so much to ourselves. At Support and Action

Group meetings all over, it is so common to have a newcomer come in and

say they have never been in a room with other CMT people before. Often,

they are emotional as they speak those words.

However, there is a HUGE push for awareness within the CMTA and Support

and Action Group network. The CMTA has declared September 19th through

the 26th CMT Awareness Week. Support and Action Groups everywhere are

being equipped with press releases, posters, activity planning

assistance, and more. Tonight, a special announcement is being made

about a nationally known radio and TV personality that be OUR voice in

Public Service Announcements to be sent out all across the country.

Starting tomorrow, the CMTA is offering CMT T-shirts for $5 and you get

a free wrist band with each order. This special offer will run though

Sept 26th. It takes all of us to spread the word. If you are able, buy

some t-shirts and wear them proudly whenever you are out. I do, and it

is a conversation starter! See www.Charcot-Marie-Tooth.org

<http://www.Charcot-Marie-Tooth.org> to order.

Last week, Jeana Sweeney, SAG Facilitator in western PA pulled together

an amazing event at the Altoona Curve Baseball game against the Trenton

Thunder. The Curve was absolutely amazing in all the ways they worked to

promote awareness of CMT. The STAR logo was seen on the Jumbotron many

times during the night. CMTA t-shirts were shot out of the cannon into

the crowd. CMT kids were celebrated by throwing out the first pitch,

being announced as Honorary Team Captains, and taking part in the on

field activities that are common at minor league ball cames. They

provided an information table right inside the main entrance where a

donated jersey signed by the team players was placed for a silent

auction. There were 5,666 people in attendance that night, and they

certainly learned about CMT that night! But most amazing was the ONE man

that walked up and said " I have CMT and I am so glad to hear about you. "

That was kind of a test for us, now we need to roll out events like this

all over. But it takes people - CMT people - people like YOU and ME. We

all need to be involved. I am a Support and Action Group Facilitator, I

am a CMT patient, I am a parent of a CMT son, and I too feel the

frustration you have with people not knowing about CMT. Most especially,

Physicians and Practitioners. But it is up to us to educate them.

If you are not involved in a Support and Action Group, I encourage you

to do so. If there is not one near you, maybe you can help start one.

There are other people like you and I, and we need to reach them!

If you are on Facebook, you can see our great new Awareness Week poster.

Gretchen, the Founder and Leader, worked with an graphic artist

that made a beautiful and moving piece of art. We are hoping that as we

move closer to the Awareness Week, this poster will get far more

attention - like being the profile picture for any CMT'er on Facebook.

Think about this theme... " I am CMT " and how would you complete that.

For me, I can say " I am CMT and I am a Packaging and Distribution

Manager " or " I am CMT and I am a Dad " or " I am CMT and I am... " the list

can go on and on. What would that statement say about you?

More info will come as we get closer. Watch our for posts from Gretchen,

or something may just spark another rant from me!

Thanks for letting me go on and on.

Mark

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[Guest guest]

When do you find the CMT T-shirts that are for sale on the CMTA

website? I did a search and came up with " no results " . Where do I

need to go on the website to find the t-shirts for sale?

Bonnie

[Guest guest]

Look under 'publications' and go all the way to the bottom of the screen.

From: [mailto: ] On Behalf Of

Bonnie Engel

Sent: Monday, August 02, 2010 10:29 AM

Subject: Re: CMT Awareness Revs Up Through Support Groups!

When do you find the CMT T-shirts that are for sale on the CMTA

website? I did a search and came up with " no results " . Where do I

need to go on the website to find the t-shirts for sale?

Bonnie