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."
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."
Replies to This Discussion
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Permalink Reply by Paul Cliff on
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It also wouldn't suprise me to learn that you are one of those guys who knows a guy who controls thousands of spambots (; < }. As far as writing the letter, I don't see as I have much choice. Look for it after the weekend. When I do post it, please be ruthless. I have no ego when it comes to that.
MicahsDaddy said: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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Permalink Reply by MicahsDaddy on
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LOL....actually....
...No. But, let me tell you what I do have. I work in Software Quality Assurance and I do use a tool to automate my test scripts. I could set up a script that runs in an endless loop which sends the email every whatever given amount of time for me....for this case, every hour...even while i am asleep. Just need to code it and hit the play/run button.
Paul Cliff said:It also wouldn't suprise me to learn that you are one of those guys who knows a guy who controls thousands of spambots (; < }. As far as writing the letter, I don't see as I have much choice. Look for it after the weekend. When I do post it, please be ruthless. I have no ego when it comes to that.
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Permalink Reply by Kim Innabi on
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Hi: I am definitely not an expert letter writer, but here is a letter I wrote a few months ago to nominate Pat for the Readers Digest contest. I don't mind at all if someone wants to edit it or has any ideas.
Dear Readers Digest:
I am writing to tell you about a very special person in my community. The community I belong to is not one that just anyone can join…in fact, it is one that no one wants to belong to. Our community is brought together by the knowledge that our sons, grandsons, nephews and beloved friends have a terminal illness. As a member of this community, I know my son is probably not going to outlive me. The community I belong to is the Duchenne Muscular Dystrophy community.
My son, Nicholas, is 11 years old and has Duchenne Muscular Dystrophy (DMD), a lethal genetic disease which affects one in every 3,500 births. There is currently no cure for DMD. By the age of 10, most boys with DMD will lose their ability to walk. In their teens, cardiac and respiratory systems begin to fail, they lose muscle function in their arms, hands and fingers…and in their 20’s, most will lose their lives. Lives spent sitting in wheelchairs, watching other kids run, jump and play. Lives spent taking medications that stunt their growth and make them overweight. Lives lived with heartache and sadness for what is missed and what will never be. Lives lived with less and less independence each day our beloved boys, our angels, are here on earth. But we have another Angel in our community as well, and her name is Patricia Furlong. Pat Furlong has changed the face of Duchenne Muscular Dystrophy from one of despair to one of hope. She has made it easier for parents to deal with membership in this community. She has given us reason to believe, to fight, and to expect a cure or treatment for DMD. Pat Furlong has made being a member of this community bearable and sometimes, if just for a moment, even fun.
Pat’s two sons, Christopher and Patrick, were diagnosed with Duchenne Muscular Dystrophy in 1984 in Ohio. The doctor told her there was no hope and nothing she could do. Her sons lost their mobility by the age of nine, and they lost their lives at ages 15 and 17. But during their lives, and to this day, she did not let the diagnosis of one doctor render her hopeless. She did not let one person’s word stop her from seeking the help that her son, Patrick, asked her for. Pat learned everything she could about DMD, how it progresses and the reasons why. She looked into what was being done to find a cure, what was being done by the public and the private sector to invest in research. One person, by herself, Pat set out to find researchers and businesses that might be able to help. Along the way she met other families with boys with DMD, and she continued to gather information and connections into the medical community. Even after she lost her sons, Pat made a lifetime commitment to all boys with Duchenne Muscular Dystrophy to help them.
Out of her never-ending energy and enthusiasm for this dream of a cure, she founded Parent Project Muscular Dystrophy. As the head of this organization, she has recruited many researchers, doctors and pharmaceutical companies to join her in her dream. Parent Project Muscular Dystrophy (PPMD) has grown from one person into an entire community of people, all fighting for the same dream. Thanks to Pat Furlong and PPMD, Congress took notice of the need for help, and passed a historic piece of legislation, the MD-CARE Act. There has been a change in the way doctors look at the diagnosis of DMD, and there have been many advances in the quality of care and quality of life for boys with Duchenne Muscular Dystrophy. PPMD holds yearly meetings where parents can meet one another and get information directly from researchers and doctors about what is currently being done and what to expect, where we can compare notes and share our triumphs and our sorrows. Pat Furlong and Parent Project Muscular Dystrophy have become the number one source of information concerning Duchenne Muscular Dystrophy. Pat is now known in many other countries around the world, and is coordinating universal cooperation between doctors and researchers to develop treatments and cures for DMD. She has been chosen for many awards for her accomplishments recently, but despite her many tasks and her constant work schedule, she is always available to personally speak to a parent, offering comfort and advice whenever it is asked for or needed.
Starting out as one person with two sick boys, Patricia Furlong has pulled the fragments of a disorganized community together and created a unified group called Parent Project Muscular Dystrophy that together will see our boys walk into the future. She is a true friend. She is an extraordinary advocate and the tireless leader of our community. Patricia Furlong is a true American Hero.
Sincerely,
Kim Innabi
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kim, that is very nice....you need to give yourself a huge pat on the back for that...much better
than what i have seen from self proclaimed writers.
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Permalink Reply by Gina Manning on
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Kim, that was a very lovely letter. One that I believe many of us feel in our hearts.
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Permalink Reply by Rhiannon Traigle on
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A few comments. I LOVE the idea of the letter!! I definately think it needs to include factual and personal information. I also think it would be great if we each added pictures of our boys with our letters so that they can put faces to the disease!!!! Someone posted a discussion a while back (oh, I think it was Sharyn) about a website that mass emails celebrities in order to get them to champion a cause...we could send them out here as well. Once the letter is done how will we go about getting everyone else involved?? (Sorry, I am always thinking of how to organize)
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Oh, and what about Ellen...she has already had Darius on her show so obviously she is aware and may be more likely to revisit the topic or become a celeb spokesperson???
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Permalink Reply by Jacobs Mommom on
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Hey Riannon:
I you can get the email addresses to me I will add them to the list.
I was thinking each of us could send our "friends" list on the board a private message to read the post and then they can tell their "friends' list and so on and so on.
I was thinking of posting on the old message board too.
We can all email our friends, family and co-workers once we get the letter and email addresses.
Maybe we can each go onto other "Groups" Boards that we belong to and make them aware.
Any other ideas here would be greatly appreciated.
I agree on the facts and I agree that we could all add pictures of our boys to make each one more personal.
Rhiannon Traigle said:Oh, and what about Ellen...she has already had Darius on her show so obviously she is aware and may be more likely to revisit the topic or become a celeb spokesperson???
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Permalink Reply by cheryl cliff on
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Permalink Reply by Jill Keenan on
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I think what Terry said about others thinking that Jerry Lewis has md covered is probably true. Just my two cents, but I think it might be worth putting in the letter--distinguishing PPMD from the MDA.
Kim--what a great letter and tribute about Pat (and our boys). She is so inspiring and I will forever be grateful to her and her commitment to end duchenne!!
Paul--Thanks for taking on this letter that your wife volunteered you for. All I can say is .....paybacks are great=)
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Thanks Cheryl! That's the discussion I was talking about. It includes the link to the site.
cheryl cliff said:
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Kim,
Wow.
Kim Innabi said:Hi: I am definitely not an expert letter writer, but here is a letter I wrote a few months ago to nominate Pat for the Readers Digest contest. I don't mind at all if someone wants to edit it or has any ideas.
Dear Readers Digest:
I am writing to tell you about a very special person in my community. The community I belong to is not one that just anyone can join…in fact, it is one that no one wants to belong to. Our community is brought together by the knowledge that our sons, grandsons, nephews and beloved friends have a terminal illness. As a member of this community, I know my son is probably not going to outlive me. The community I belong to is the Duchenne Muscular Dystrophy community.
My son, Nicholas, is 11 years old and has Duchenne Muscular Dystrophy (DMD), a lethal genetic disease which affects one in every 3,500 births. There is currently no cure for DMD. By the age of 10, most boys with DMD will lose their ability to walk. In their teens, cardiac and respiratory systems begin to fail, they lose muscle function in their arms, hands and fingers…and in their 20’s, most will lose their lives. Lives spent sitting in wheelchairs, watching other kids run, jump and play. Lives spent taking medications that stunt their growth and make them overweight. Lives lived with heartache and sadness for what is missed and what will never be. Lives lived with less and less independence each day our beloved boys, our angels, are here on earth. But we have another Angel in our community as well, and her name is Patricia Furlong. Pat Furlong has changed the face of Duchenne Muscular Dystrophy from one of despair to one of hope. She has made it easier for parents to deal with membership in this community. She has given us reason to believe, to fight, and to expect a cure or treatment for DMD. Pat Furlong has made being a member of this community bearable and sometimes, if just for a moment, even fun.
Pat’s two sons, Christopher and Patrick, were diagnosed with Duchenne Muscular Dystrophy in 1984 in Ohio. The doctor told her there was no hope and nothing she could do. Her sons lost their mobility by the age of nine, and they lost their lives at ages 15 and 17. But during their lives, and to this day, she did not let the diagnosis of one doctor render her hopeless. She did not let one person’s word stop her from seeking the help that her son, Patrick, asked her for. Pat learned everything she could about DMD, how it progresses and the reasons why. She looked into what was being done to find a cure, what was being done by the public and the private sector to invest in research. One person, by herself, Pat set out to find researchers and businesses that might be able to help. Along the way she met other families with boys with DMD, and she continued to gather information and connections into the medical community. Even after she lost her sons, Pat made a lifetime commitment to all boys with Duchenne Muscular Dystrophy to help them.
Out of her never-ending energy and enthusiasm for this dream of a cure, she founded Parent Project Muscular Dystrophy. As the head of this organization, she has recruited many researchers, doctors and pharmaceutical companies to join her in her dream. Parent Project Muscular Dystrophy (PPMD) has grown from one person into an entire community of people, all fighting for the same dream. Thanks to Pat Furlong and PPMD, Congress took notice of the need for help, and passed a historic piece of legislation, the MD-CARE Act. There has been a change in the way doctors look at the diagnosis of DMD, and there have been many advances in the quality of care and quality of life for boys with Duchenne Muscular Dystrophy. PPMD holds yearly meetings where parents can meet one another and get information directly from researchers and doctors about what is currently being done and what to expect, where we can compare notes and share our triumphs and our sorrows. Pat Furlong and Parent Project Muscular Dystrophy have become the number one source of information concerning Duchenne Muscular Dystrophy. Pat is now known in many other countries around the world, and is coordinating universal cooperation between doctors and researchers to develop treatments and cures for DMD. She has been chosen for many awards for her accomplishments recently, but despite her many tasks and her constant work schedule, she is always available to personally speak to a parent, offering comfort and advice whenever it is asked for or needed.
Starting out as one person with two sick boys, Patricia Furlong has pulled the fragments of a disorganized community together and created a unified group called Parent Project Muscular Dystrophy that together will see our boys walk into the future. She is a true friend. She is an extraordinary advocate and the tireless leader of our community. Patricia Furlong is a true American Hero.
Sincerely,
Kim Innabi
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