Who considers themselves to be an expert in letter writing?

I approached Will from PPMD with this idea and he said if we think it would work coming from parents, families and friends of DMD/BMD boys we should go for it.

So here is my idea:

We get someone to write a very informative but short and to the point letter about DMD/BMD, Pat and PPMD and why Oprah needs to do a show on this. Once the letter is written it gets posted on the board for everyone to copy and paste it into their emails.

Here's the catcher! We all start to send these letters from all over the world and we send one every hour on the hour till someone gets a positive reply!

Is there anyone willing to give the letter a shot? I could write it but I tend to be too wordy as you can see from this post:)

I just got this email from Will and thought I would add this onto this post:

"In my opinion, it would be a stronger statement to start off with a joint letter written by a handful of parents and grandparents, and then follow up individually…but I think it may be stronger if the initial outreach comes from families rather than someone at PPMD, since we’ve already reached out to the show so many times."

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I agree! I would be happy to 'edit' the letter, but to write it at this point would take me forever with stuff going on here......
And I will be happy to email. If someone could post a set of email addresses online, that would be good as well.

Lori
I may have missed something but what show are you talking about?
That might have helped if I would have mentioned the show!!!! Oprah. I edited the post and added that information. Thanks Janine:)

Janine said:
I may have missed something but what show are you talking about?
Hi Jacobs mommom,

While he may not be considered an "expert letter writer" my husband has quite a way with words. And although he doesn't yet know I am volunteering his services, I think he might be able to handle this one. A coordinated letter campagin is a great idea! What shows are you aiming for?

cheryl
Hi Cheryl:

I have read your husbands posts and I agree with you in him having a way with words so I second that notion:)

I figured we would start with Oprah but we can email these out to as many people as we want at the same time!

I volunteer for ATailToTell which is a puppymill rescue and we are affiliated with Main Line Rescue. They are the rescue that paid for the billboard ad that prompted Oprah to do the show on puppymills when nothing else worked.

I think an in your face campaign like this will work or at least we all should give it a try. Maybe we can get the attention of the Bill and Melinda Gates Foundation as well and other Celebrities or Politicians.

cheryl cliff said:
Hi Jacobs mommom,

While he may not be considered an "expert letter writer" my husband has quite a way with words. And although he doesn't yet know I am volunteering his services, I think he might be able to handle this one. A coordinated letter campagin is a great idea! What shows are you aiming for?

cheryl
I think the poem by Alisha Ballew says it all for us and is very strong. Maybe it could be sent too as a demonstration of how we feel. I do agree that we all need a list and email addresses and we should hit multiple people, shows etc. individually so that our message gets across. If we only have the email addresses or someone can compile a list, then we can all seek help from many sources. Michelle
The best way that I can think of getting all of the email address's together is for everyone to send the addresses that they want included in a private message to me and then when I have them all in a few days I will post them all at once in one post so that we don't have them scattered over the board.

Kelvinsmom - Michelle said:
I think the poem by Alisha Ballew says it all for us and is very strong. Maybe it could be sent too as a demonstration of how we feel. I do agree that we all need a list and email addresses and we should hit multiple people, shows etc. individually so that our message gets across. If we only have the email addresses or someone can compile a list, then we can all seek help from many sources. Michelle
I read this and was going to volunteer my husband but looks like someone beat me to the punch=) (I'm sure my hubby will so be sooo disappointed=) At any rate, I think this is a fabulous idea and it never hurts to try. I am more than willing to email, etc--do whatever.

On the Bill and Melinda Gates thing, I know several have posted that others have tried and failed to get him to donate. Something about focusing on issues abroad--I am totally fogetting now what was said. BUT I read something in some Economic magazine of my husbands about how Bill Gates donated $125 million to a campaign in NYC with Mayor Bloomberg in an effort to stamp out smoking. Now, NYC is definitely not abroad and I'm sorry but SMOKING??!! Now, I realize that others smoke (some of my family memebers do and have in the past) but come on, our sons didn't CHOOSE to get DMD--smokers CHOOSE to take that first puff. (Please don't anyone take offense here, as it is not my intention to offend or to pass judgement on anyone who smokes--some of my most favorite people smoke. But would rather see the money spent on DMD:) The whole reason I brought this up was to say that we now might have some leverage, so to speak, seeing that he has donated "locally." My husband was going to write a letter to Bill Gates about this, and he still will, but it might have a better impact if we campaign, like has been suggested for the Gates Foundation as well as Oprah. I think a collective stand from all of the parents, grandparents, etc. can make a big statement.

What a great idea!! Hope we get more on board--members here and deep pockets=)
I think the advantage here is that we get everyone to do it every hour on the hour for ever how long it takes to get a response from these people. I wouldn't think it will take long if at least 500 of us are doing this from all over the world. Imagine the gridlock of emails these people are going to have to go thru:) As far as them trying to block all of the senders I would think that would be almost as impossible. Just easier for them to respond:) And we don't stop until we get a positive response!

Jill Keenan said:
I read this and was going to volunteer my husband but looks like someone beat me to the punch=) (I'm sure my hubby will so be sooo disappointed=) At any rate, I think this is a fabulous idea and it never hurts to try. I am more than willing to email, etc--do whatever.

On the Bill and Melinda Gates thing, I know several have posted that others have tried and failed to get him to donate. Something about focusing on issues abroad--I am totally fogetting now what was said. BUT I read something in some Economic magazine of my husbands about how Bill Gates donated $125 million to a campaign in NYC with Mayor Bloomberg in an effort to stamp out smoking. Now, NYC is definitely not abroad and I'm sorry but SMOKING??!! Now, I realize that others smoke (some of my family memebers do and have in the past) but come on, our sons didn't CHOOSE to get DMD--smokers CHOOSE to take that first puff. (Please don't anyone take offense here, as it is not my intention to offend or to pass judgement on anyone who smokes--some of my most favorite people smoke. But would rather see the money spent on DMD:) The whole reason I brought this up was to say that we now might have some leverage, so to speak, seeing that he has donated "locally." My husband was going to write a letter to Bill Gates about this, and he still will, but it might have a better impact if we campaign, like has been suggested for the Gates Foundation as well as Oprah. I think a collective stand from all of the parents, grandparents, etc. can make a big statement.

What a great idea!! Hope we get more on board--members here and deep pockets=)
Do you think part of the reason it is hard to get the attention of people like Oprah and Bill Gates or any other celebrity is because they think that Jerry Lewis already has this covered? Although we all know that the Jerry Lewis Telethon is for many neruo-muscular diseases not just Duchenne and Beckers, most of the outside world doesn't know this. I would definitely be part of your mass e-mail. Just let me know exactly what needs to be done, and I will do it. There has to be some way to attract their attention. Terry
Maybe we can get suggestions from everyone on what points to get across in the letter.
I was thinking, what about stressing that the treatments that the researchers are coming up with will not only help our boys but others with genetic diseases?
Ummm, I have 3 email addresses...if they block one, i'll go to the next until that one gets blocked...LOL.

Jacobs Mommom said:
I think the advantage here is that we get everyone to do it every hour on the hour for ever how long it takes to get a response from these people. I wouldn't think it will take long if at least 500 of us are doing this from all over the world. Imagine the gridlock of emails these people are going to have to go thru:) As far as them trying to block all of the senders I would think that would be almost as impossible. Just easier for them to respond:) And we don't stop until we get a positive response!

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