CMT Awareness

[Guest guest]

Gretchen and Other CMTers, I was listening to the local radio station the other

day and they were having a fund-raising AND AWARENESS event for poeple with MS.

I was very receptive to listening as they told of MS peoples' daily struggles

with " simple things " like buttons. Since so many CMT people have the same

difficulties, I was thinking we really need to do something like that/ Anybody

here got any ideas; brainstorming is fine; throw any ideas out there. I think

it would really help.

Dawn

[Guest guest]

Look in our Files in the CMT Good Press folder. Also, for newer

members, at one time inagurated Awareness Ribbons to thousands.

That was followed by the first-ever CMT postage stamp which you can

see (and order, if you want) at http://www.zazzle.com/_postage-

172363272014196635 if that link won't work, try the link from our

main page that says " USPS-approved letter stamp. "

For those of you who feel comfortable, I suggest contacting your

local newspaper and telling your story. This is a link to US

newspapers and from there you can find all of them in your state.

Then contact them. Grass roots awareness like this reaches so many

people. Think global, act local.

http://www.50states.com/news/

Also with the newspapers, consider writing a " Letter to the Editor "

or an " Op - Ed " piece on CMT.

If your local television studio has a " health report " feature, you

may want to contact them and suggest a CMT story on you (and possibly

others in your area) You may want to suggest they do a PSA about CMT

(PSA's are Public Service Announcements)

MDA's Quest magazine features persons with CMT now and then, and the

magazine has a vast readership, not only those with a neuromuscular

disease. My own story, and how began was in

http://www.mda.org/publications/Quest/q114subabuse.html

" Quest readers like reading about real people facing the same

challenges they face. Please share your experience and wisdom related

to the topics listed below. Your contribution will help others living

with neuromuscular diseases. " Much info at

http://www.mda.org/publications/Quest/q_helpquest.html

The Neuropathy Association also encourages your personal stories. See

http://www.neuropathy.org/site/PageServer?pagename=supportus_twenty

High school/College alumni magazines are another good resource for CMT

Awareness, and these magazines have extensive readership. Tell your story in an

'update'.

I am working on a few other projects with others right now along the

lines of greater awareness for CMT.

~ Gretchen

[Guest guest]

I am with you on that. It is great that MDA does help people with

CMT,but I feel that sometimes that they don't help enough. Maybe we

all should start our own charity for people that have any form with

CMT. Like maybe walk a thons or swim a thons, something that can get

awareness for a disease that has affected just the same or more people

than others with a form of MD.

[Guest guest]

Mark Farruggia and a few friends started Golden Benefit & Special Memories to

promote AWARENESS for CMT and other hereditary neuropathies in the Rochester NY

area but is looking to expand their goup for more information contact Mark at

Farruggia1@...

[Guest guest]

Gretchen,

Thank you. I just checked out the Quest magazine online. Since moving, I am not

getting it anymore even though I thought I registered with the MDA here. I will

email the local MDA about getting the magazine. Anyway, I did not see your

story yet but read an interesting " From Where I Sit " at the back of the most

recent QUEST. The man does have CMT and runs! Not just walks but runs! Very

inspiring! I will continue to look for your story. Thanks again for the ideas.

Dawn