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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Could you please email me the list of contacts at anthony@anthonysabilities.com so I can use them?

Jacobs Mommom said:
Thanks Paul for working on this for all of us!

Paul Cliff said:
The current draft is 3524 characters. I'll do my best to chop it down. It will definitely be published next weekend.

Karen Barnett said:
I was looking at the Oprah submission form and the letter can only be a maximum of 2000 characters. Will the letter be under 2000 characters? Is this the only place we have to submit the letters to her show or is there another avenue?

With Maury I am not so sure this is a topic he would even consider for his show. Every time I have tuned into that show the only topic I have seen involves paternity tests and cheating partners.
Are we all ready to start the letter blitz? Do we have a final letter? I've been sick for a week and just got back on here so was wondering.

Do you think we should start a new post with just the letter and the contacts so others can see it and hopefully more will get involved?

I know, I know, a lot of questions:)
Hi All,

I think we have the final letter, just finished. Personally, I think this last one is great and should be THE one we send to everyone, instead of just Oprah. I spoke with Paul last nite and I think he is going to forward it on to you so we can get started, upon everyone's aproval of this one.

Jacobs Mommom-sorry to hear you were ill, glad you are back! Let us know what the protocol will be once you get the letter.
I hope this works!

Jacobs Mommom said:
Are we all ready to start the letter blitz? Do we have a final letter? I've been sick for a week and just got back on here so was wondering.

Do you think we should start a new post with just the letter and the contacts so others can see it and hopefully more will get involved?

I know, I know, a lot of questions:)

You started this thread, so i think you can put an end to it too...

Once the final draft is ready, it probably would be a good idea that you start a new thread, upload the draft and upload the contact list.

If needed, I can help you with it as well. Let me know.
Here's the final letter. It weighs in at right around 2000 characters, a little more or less depending upon the length of your child's name and whether the form requires you to put your contact information in the body of the message. Obviously, the document can serve as a stand alone postal letter or email message. Let's get rockin' here.
Hi Guys,

Well, I've done it. I sent the thread information to all my PPMD friends, and a couple of groups. I will send to the rest of my groups later. Also, I sent the final letter to the Oprah show.

Okay I'm posting a new post with the letter and the contacts.

I submitted a funding proposal to the Gates Foundation on behalf of PPMD about 7 years ago to fund post docs to get more researchers in the field. I thought I might have an in since my Dad went to law school with his Dad. At that time they were concentrating on international vaccinations. They wanted to make a big impact and not focus on individual disease treatment possibilities. Things have changed, their agenda has changed, and the science has changed. I think it is worth another try.


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=)

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