idea for Lenka

[Guest guest]

Gretchen,

I am humbled and amazed at the response this story is getting around

here. I've had a lady in town call me who is 77, diagnosed with CMT

at 39, call me wanting to talk about her experiences (I get the

feeling she hasn't met many other people with CMT). I've had a couple

of messages suggesting writing a book. People are looking at me with

different understanding. I was scared last night about looking small

or weak (especially around school) but now everyone is commending me

for my strength, imagine that.

I would love to reach wider audiences- half hoping AP wire might see

the essay . But perhaps I will submit to other papers in more urban

areas. If you have any suggestions, I'd love to hear them.

Thank you so much.

We are so much stronger than we give ourselves credit for sometimes.

Peace,

Lenka

>

> Lenka, hi,

>

> Here's an idea for you: With your contact at your local paper, can

she

> get you a story in the major Las Vegas and other NV newspapers? Why

not

> ask and see what can happen. Consider this, take the population of

Las

> Vegas (can get from the Census,) then do some basic math based on

the 1

> out of 2500 people having CMT. Add this to your story. With the huge

> expanse of Las Vegas and influx of people, your story could reach so

> many more - many who may be unaware it is CMT they have.

>

> ~ Gretchen

>

[Guest guest]

Hi Lenka,

Sorry it has taken so long to reply. The population of Nevada on

April 1, 2000 was 1,998,257 - this is from the 2000 Census.

http://www.census.gov/census2000/states/nv.html But the senior

partner at the firm I'm with tells me that Nevada now has about 4.5

million people. (Our firm handles disability cases there too)

However, best to double check this figure with your Nevada Secretary

of State's Office. Then, using the given 'CMT number' - affecting 1

out of 2,500, you can come up with a number that may indicate the

numbers of people with CMT in your state and possibly adding these

facts to your story may generate more interest and awareness.

As for newspapers, I would suggest using your local contact too

contact the major papers, see

http://www.50states.com/news/nevada.htm Looks like The Las Vegas Sun

is the major newspaper - see http://www.lasvegassun.com/ you might

try writing an Opinion piece or Letter to the Editor - you may have a

better chance of getting the story published - see

http://www.lasvegassun.com/opinion/flashpoint/ you could add more

info about CMT in general first, begin with discussing lack of

research funds for neuromuscular syndromes, or the like, and quickly

narrow it to CMT, then your story. The Sun does seem to run health

pieces, however, you may need to change your writing style somewhat

to reflect real awareness for those that no nothing about CMT. (in

other words, " know your audience " ) I feel you've got good writing

skills, you Can Do this!

As for an AP wire story - it is a longshot, but why not contact the

staff at http://hnf-cure.org as they are doing major USA research and

press, and you may find common goals to achieve awareness through large news

coverage.

What we really need for an AP wire story is for media contacts in ALL

countries where we have members, then some stellar news, like

when the new CMT trials prove good results, or something else out of

Europe for example, then if all members would help this global

AP wire CMT awareness issue by providing their newspaper name and

editor's email, just think about the great possibilities. Of course,

the wire story may need to be translated to hit all the right

newsrooms, but that is a small detail.

Back to the AP wire, here's a couple of links/contact info.http://www.ap.org/

http://www.ap.org/pages/contact/contact_pr.html again, writing a Press Release

is entirely different, but I believe you can do it!

So there's a few thoughts from me on your ideas.

~ Gretchen

[Guest guest]

Thanks for the great ideas, Gretchen.

I'm actually in Nevada City, California. We were a small gold

mining town called Nevada before the state, then changing the name

once the state took it next door. We're a little over an hour from

Nevada and Tahoe in the foothills of the Sierra Nevadas. I would be

open to papers in Nevada, though.

I've gone for broke and submitted it to the New Yorker after lots of

encouragement from my new " fans " around here . I am getting

recognized in stores (small town, I know, but it's still something

amazing).

Thanks for all of the leads with ap stories.

My contact suggested touching base with the Sacramento Bee and

seeing how things go from there. I'll give the New Yorker a couple

of weeks and then move to the next step.

The hnf.org site has contacted me, as has the CMT Association for

their newsletter. I'm not sure of the protocol, but I'm not

hoarding my story, either. I just told them both that the other was

interested and I wasn't too clear about the logistics of that. I'm

happy to be included in both of their sites/newsletters.

It's a wild ride around here. I've had a writing workshop paid for

by a " fan " and a homeopathic practitioner offer to treat me for free

(seems like a huge commitment, though. Not sure I'm up for the

task). I've had complete strangers give me hugs and commend my

writing. Pretty amazing stuff. I've also had two locals with CMT

contact me. Small world after all.

Thanks again for your help,

Lenka