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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OK, I can't sleep and I am still thinking of this letter writing campaign. I have a thought...

I am worried that if we all use the exact same letter that it will be dismissed as a stunt put on by the orgaization for publicity (so to speak). I was thinking that we should create a format that includes all of the same factual info and then have an outline to add our personal info (including picture?). We can use a common title or heading that only deviates by who we are representing. Ok...I am rambling...this is what I mean...

Subject Line: Help Save My Son or My Son Has DMD etc. (where 'son' is can be substituted with whom ever you are writing for such as 'grandson' or 'nephew' or 'neighbor' etc.)

Then we can use the same subject line as a letter title or in the introduction.

Then begin the body of the text with facts. (short and to the point so they'll read it??? )

Then title the next paragraph "My Story" or "My Son's Story" or add the name of the child?
In this section we can use the same format such as...My ____ was diagnosed with DMD on _____ date. He is _____years old. We live in ______. We are fighting for a cure. etc.

This way we are consistent in what we send out but are still adding a personal touch.
And....are we only going to send this to talk show hosts...or are we looking to get anyone with influence and celebrity to support us?

Just some thoughts...
Hi Rhiannon: I am joining you in the "can't sleep" group! I think your idea about the personalized letter with a common theme makes good sense.
Hi Christian and Gina: Thanks so much for your kind words about my letter. I guess it didn't win the Reader's Digest contest (knowing me I emailed to the wrong place!!!), but Pat is amazing and she should have won!
Kim
I am in to send the letter every minute if we have to! I also think different format with the same factual information may catch someones attention. We already wrote to anyone and everyone we could get mails out like TV and media folks(larry king, ellen, etc).
Wow I love the ideas that are coming in.

Paul thanks for giving this shot. You are very brave:)
Kim I love your letter and do think that Paul will use some of it!
Rhiannon I like your ideas about personalizing some of it and adding a picture. I would like to add to make sure you downsize the picture so it doesn't get rejected.
Jill I think you are right about the MDA because I get that reaction from people I tell about PPMD so I do think we should distinguish between the two.
Also may Paul could mention about the Public Service Announcement done with Olympia Dukakis and how we need to get it aired and they could play it on their shows.

I think the email goes out to TV shows, radio shows, newspapers, politicians and anyone else who we think can afford to send some money PPMD's way:)

I need you all to start to send me some email addresses.

Christian is there a program out there that the public can buy that does what the software you are talking about does? Automatically send the emails whenever you set the timer for? At a reasonable price? I know, I know I'm not asking for too much, right:)
Jacobs Mommom said:
...Christian is there a program out there that the public can buy that does what the software you are talking about does? Automatically send the emails whenever you set the timer for? At a reasonable price? I know, I know I'm not asking for too much, right:)

I'm not a fan of the idea here for an email "assault" in this regards. I *do* think a targeted email campaign coming from multiple people with personalized emails will get some folks attention. I think an automated email assault would be detrimental to that purpose. If someone sent me an email every hour on the hour (seems like Vista Print does that...) - I would be annoyed and absolutely would say to hell with them.
And if everyone is using the same subject in the email - its pretty simple to setup a rule to auto-delete them as they come in...
So I think this should be considered just like an email effort when contacting our Senators and such. Everyone emails separately (can use a template that can be personalized) and then periodically following-up asking if they've considered the initial request (not resending the same email...).
Just my .02¢
~Paul
According to Will they have tried numerous times to get the producer of Oprahs show to do a show with Pat and they were turned down because of this being a "rare" disease. I think we need to be in their faces with this, call it a stunt if you like, whatever, we need to get their attention once and for all. We have nothing to lose since contacting them otherways didn't work. If they are annoyed then we at least brought ourselves to mention with them which is better than what we have now.

We had people emailing them separately about Puppymills for years and no one was contacted but once the billboard was in their face it was a done deal. I don't want to repeat the billboard idea so that is why I thought of this. It has to be a timed effort for them to realize how serious we are about this and that something needs to be done now and again stress the fact that the treatments the researchers are working on will help other disease as well.

Dr. Phil might be a good one to try too?

Again, only my 2 cents.

Paul Johnson said:
Jacobs Mommom said:
...Christian is there a program out there that the public can buy that does what the software you are talking about does? Automatically send the emails whenever you set the timer for? At a reasonable price? I know, I know I'm not asking for too much, right:)

I'm not a fan of the idea here for an email "assault" in this regards. I *do* think a targeted email campaign coming from multiple people with personalized emails will get some folks attention. I think an automated email assault would be detrimental to that purpose. If someone sent me an email every hour on the hour (seems like Vista Print does that...) - I would be annoyed and absolutely would say to hell with them.
And if everyone is using the same subject in the email - its pretty simple to setup a rule to auto-delete them as they come in...
So I think this should be considered just like an email effort when contacting our Senators and such. Everyone emails separately (can use a template that can be personalized) and then periodically following-up asking if they've considered the initial request (not resending the same email...).
Just my .02¢
~Paul
My plan was to create a template which each person would personalize. My belief is that the letter needs to be relatively brief, not more than three paragraphs, and get people's attention in the first sentence. I also believe that the letters should be sent hard copy with a stamp and also emailed. I suspect that the spam filters employed by celebrities filter out any emails where there is a large volume of similar text, and if we only email we run the risk of none of the messages getting through.

Jacobs Mommom said:
According to Will they have tried numerous times to get the producer of Oprahs show to do a show with Pat and they were turned down because of this being a "rare" disease. I think we need to be in their faces with this, call it a stunt if you like, whatever, we need to get their attention once and for all. We have nothing to lose since contacting them otherways didn't work. If they are annoyed then we at least brought ourselves to mention with them which is better than what we have now.

We had people emailing them separately about Puppymills for years and no one was contacted but once the billboard was in their face it was a done deal. I don't want to repeat the billboard idea so that is why I thought of this. It has to be a timed effort for them to realize how serious we are about this and that something needs to be done now and again stress the fact that the treatments the researchers are working on will help other disease as well.

Dr. Phil might be a good one to try too?

Again, only my 2 cents.

Paul Johnson said:
Jacobs Mommom said:
...Christian is there a program out there that the public can buy that does what the software you are talking about does? Automatically send the emails whenever you set the timer for? At a reasonable price? I know, I know I'm not asking for too much, right:)

I'm not a fan of the idea here for an email "assault" in this regards. I *do* think a targeted email campaign coming from multiple people with personalized emails will get some folks attention. I think an automated email assault would be detrimental to that purpose. If someone sent me an email every hour on the hour (seems like Vista Print does that...) - I would be annoyed and absolutely would say to hell with them.
And if everyone is using the same subject in the email - its pretty simple to setup a rule to auto-delete them as they come in...
So I think this should be considered just like an email effort when contacting our Senators and such. Everyone emails separately (can use a template that can be personalized) and then periodically following-up asking if they've considered the initial request (not resending the same email...).
Just my .02¢
~Paul
And, with what is already listed to include in the letter I think you might want to consider addressing the issue of this being a "rare" disease which takes it off the list of "acceptable show topics" since that is why DMD was rejected previously. Duchenne IS rare, but more important than that is the rare form of courage our boys live by, their personal inner strength.

Jacobs Mommom said:

Christian is there a program out there that the public can buy that does what the software you are talking about does? Automatically send the emails whenever you set the timer for? At a reasonable price? I know, I know I'm not asking for too much, right:)

there is freeware out there that could probably do it. the one we use at work (rational robot) costs around $4,000 per license. but i was just kind of kidding about the automated script. I agree with paul johnson that every hour may be too much. once or twice a day may be better. I imagine they would be getting emails throughout the day for 16 to 24 hours....maybe even more with Rhiannon and Kim's inability to sleep...oh, 24 hours is max in a day, my bad...LOL.

a different subject line would be good too, but rules could be set up for the email body as well. does that mean there needs to be a few or more different emails as well?

snail mail is also a good idea....though, those could get lost in the shuffle with all the other mail celebrities get.

whatever the case, we have more to lose by doing nothing...."Let's roll"

Cheryl,

I was thinking the same thing...we don't want the focus to be on the disease, but on the bravery and compassion and determination of the people fighting for a cure!! The story is not DMD, the story is my child, and your children, and us, and Pat and every person in the world that is devoting their lives to this! If a talk show host can focus an entire show on ONE person, why can't they focus on one 'family' of people!


cheryl cliff said:
And, with what is already listed to include in the letter I think you might want to consider addressing the issue of this being a "rare" disease which takes it off the list of "acceptable show topics" since that is why DMD was rejected previously. Duchenne IS rare, but more important than that is the rare form of courage our boys live by, their personal inner strength.
I agree with you Cheryl and I also agree with keeping it short and to the point. I think to that if we stress that even though it is rare, the research will help to treat other diseases as well.

cheryl cliff said:
And, with what is already listed to include in the letter I think you might want to consider addressing the issue of this being a "rare" disease which takes it off the list of "acceptable show topics" since that is why DMD was rejected previously. Duchenne IS rare, but more important than that is the rare form of courage our boys live by, their personal inner strength.

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