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."

Views: 298

Reply to This

Replies to This Discussion

Jacobs Mommom said:
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. I do have one concern though about not talking about the disease DMD. Before Jacob was diagnosed I have to tell you that I had no idea that it was a disease that killed children in their early teens. I just would watch the telethon and assume that they spent their lives in a wheelchair. I had no idea that it affected their hearts and their brains and that time is of the essence to find a cure and I do think that we need to have that stressed in the letters.


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.
All,

I am done with my first draft, but I need a little information. Are there any outside awards or honors that Ms. Furlong has received? I would like to add that to the list of reasons for the host to include Ms. Furlong on their show. Also, before I post the draft, I am sending it to a friend of mine who used to work for a large entertainment company that you've all heard of. Part of his duties included getting artists booked on chat shows to pitch their latest project, and I thought he might have some useful insight on tone and content.
I've emailed Ryan and Will for your answers to the awards.

Paul Cliff said:
All,

I am done with my first draft, but I need a little information. Are there any outside awards or honors that Ms. Furlong has received? I would like to add that to the list of reasons for the host to include Ms. Furlong on their show. Also, before I post the draft, I am sending it to a friend of mine who used to work for a large entertainment company that you've all heard of. Part of his duties included getting artists booked on chat shows to pitch their latest project, and I thought he might have some useful insight on tone and content.
Paul:

Will sent me this info:

Hey Donna,

Here is the link to Pat’s bio online which may be helpful. Also, please note…

- Earlier this year, Pat received the Research!America Advocacy Award (http://www.parentprojectmd.org/site/DocServer/Furlong_Advocacy_Awar...)

- And, Pat was chosen by Nancy Grace and CNN Headline News as a finalist in their Extraordinary Parents Contest (http://www.cnn.com/2008/US/02/01/NancyGraceExtraordinaryParentConte...)

Hope these things help!
Will





Jacobs Mommom said:
I've emailed Ryan and Will for your answers to the awards.

Paul Cliff said:
All,

I am done with my first draft, but I need a little information. Are there any outside awards or honors that Ms. Furlong has received? I would like to add that to the list of reasons for the host to include Ms. Furlong on their show. Also, before I post the draft, I am sending it to a friend of mine who used to work for a large entertainment company that you've all heard of. Part of his duties included getting artists booked on chat shows to pitch their latest project, and I thought he might have some useful insight on tone and content.
Great. Thanks.

Jacobs Mommom said:
Paul:

Will sent me this info:

Hey Donna,

Here is the link to Pat’s bio online which may be helpful. Also, please note…

- Earlier this year, Pat received the Research!America Advocacy Award (http://www.parentprojectmd.org/site/DocServer/Furlong_Advocacy_Awar...)

- And, Pat was chosen by Nancy Grace and CNN Headline News as a finalist in their Extraordinary Parents Contest (http://www.cnn.com/2008/US/02/01/NancyGraceExtraordinaryParentConte...)

Hope these things help!
Will





Jacobs Mommom said:
I've emailed Ryan and Will for your answers to the awards.

Paul Cliff said:
All,

I am done with my first draft, but I need a little information. Are there any outside awards or honors that Ms. Furlong has received? I would like to add that to the list of reasons for the host to include Ms. Furlong on their show. Also, before I post the draft, I am sending it to a friend of mine who used to work for a large entertainment company that you've all heard of. Part of his duties included getting artists booked on chat shows to pitch their latest project, and I thought he might have some useful insight on tone and content.
Having been volunteered for this, I submit my efforts for the review and comment of all. Don't tell me its great, I already think that, though I think it could use a little trimming. Tell me it's awful but with a little nip here and a tuck there it might be serviceable. If you seriously think its effective, the credit goes to Cheryl and my friend Brian Hawk who supplied valuable input that focused my efforts.
Attachments:
I tried to insert comments but I didn't know how to save them once I did and I didn't want to wreck your letter.

Just a few suggestions in parenthesis.

I am a [grandparent, parent, brother, sister, aunt, uncle, (etc.)] of _________, age _____, and [he/she] is one of the thousands of children in this country afflicted by Duchenne Muscular Dystrophy (DMD). On behalf of him/her and I am asking that you book maybe interview instead of book) Pat Furlong as a guest on your show because she is our champion in putting out the message (that) there is hope and if all Americans just work together a little harder we can save our [son/daughter/cousin/nephew, etc.]. DMD is (a) hereditary disease (that) puts most children into a wheelchair before (their 16th birthday) they get a driver’s license and kills them (in their mid 20's due to heart failure) at an age where their peers are off to college or starting families. Today, there is no cure. However, we have reason for hope because of efforts from brave and brilliant people, including an unassuming housewife and mother from Ohio, a (an) amazing woman named Pat Furlong. Because of her passion to cure Duchenne we (our boys) have a fighting chance. She was unable to reach her goal in time to save her own two sons, gone 10 years now. Please help her reach this difficult goal in time to save mine and all the others.

I am asking that you book Ms. Furlong as a guest on your show because she is our champion in putting out (sending out) the message (that) there is hope and if all Americans just (would) work together (,) a little harder (,) we can save our [son/daughter/cousin/nephew, etc.]. Pat has already (take out already) received public service awards like (such as) Research!America's 2008 Gordon and Llura Gund Leadership Award, been a finalist for the Nancy Grace Extraordinary Parent Contest and (has) been profiled in publications like the New York Times and Esquire Magazine because she is the one who has overcome the tragedy of losing her two sons and mastered the art of articulating our needs to our government leaders, doctors and scientists world wide. Since she co-founded the non-profit organization, Parent Project Muscular Dystrophy ( http://www.parentprojectmd.org ), the (many) government (s), doctors and scientists have finally begun focusing their efforts on translating academic theory into real treatments that show promise for some of the children afflicted by this curse. This is huge when you consider DMD has afflicted humanity for as long as humans have existed.

If you book Pat then you (Booking Pat) will do a number of good things. She is a brilliant public speaker and advocate and will present extremely well on your show. You will provide a voice for the extremely(all of our) brave children who must (take out must) live knowing (they will get weaker day by day and most of these children eventually realize that they will pass away well before their time. )their muscles die a little more each day. Most of these children eventually realize that they will pass away well before their parents. You’ll also enable Pat to explain to the American public that this is not just some rare affliction that only happens to somebody else's child. ( and what to look for in your child so that they can be diagnosed early.) To the contrary, DMD is the most common lethal hereditary childhood disease on the planet. It does run in families but in two thirds of all diagnosed cases there is no family history. It could happen to anybody.(anyones child) It could happen to your family, randomly with the next birth. Also, you can help your viewers understand that the groundbreaking work of the MDA, Jerry’s Kids, has not been enough. It's going to take more. It's going to take your effort, today to help Pat reach her goal before it is too late for my child.

While I urgently wait for a cure and care for my son, would you please give Pat and DMD families all over the world a voice, a chance to end Duchenne?


Paul Cliff said:
Having been volunteered for this, I submit my efforts for the review and comment of all. Don't tell me its great, I already think that, though I think it could use a little trimming. Tell me it's awful but with a little nip here and a tuck there it might be serviceable. If you seriously think its effective, the credit goes to Cheryl and my friend Brian Hawk who supplied valuable input that focused my efforts.
Thanks. Everybody else? Come on in the water's fine. Seriously, these are excellent suggestions, and it's probably better for a number of reasons if each of us makes little tweaks to what we send to make it more personal and less susceptible to spam filters when the messages are emailed. Lastly, I have some vague idea that there are dozens of these shows on, but other than Oprah, I couldn't name a single one. Where are we going to send these, and who's going to do the work to dig up the good postal and email addresses?

Jacobs Mommom said:
I tried to insert comments but I didn't know how to save them once I did and I didn't want to wreck your letter.

Just a few suggestions in parenthesis.

I am a [grandparent, parent, brother, sister, aunt, uncle, (etc.)] of _________, age _____, and [he/she] is one of the thousands of children in this country afflicted by Duchenne Muscular Dystrophy (DMD). On behalf of him/her and I am asking that you book maybe interview instead of book) Pat Furlong as a guest on your show because she is our champion in putting out the message (that) there is hope and if all Americans just work together a little harder we can save our [son/daughter/cousin/nephew, etc.]. DMD is (a) hereditary disease (that) puts most children into a wheelchair before (their 16th birthday) they get a driver’s license and kills them (in their mid 20's due to heart failure) at an age where their peers are off to college or starting families. Today, there is no cure. However, we have reason for hope because of efforts from brave and brilliant people, including an unassuming housewife and mother from Ohio, a (an) amazing woman named Pat Furlong. Because of her passion to cure Duchenne we (our boys) have a fighting chance. She was unable to reach her goal in time to save her own two sons, gone 10 years now. Please help her reach this difficult goal in time to save mine and all the others.

I am asking that you book Ms. Furlong as a guest on your show because she is our champion in putting out (sending out) the message (that) there is hope and if all Americans just (would) work together (,) a little harder (,) we can save our [son/daughter/cousin/nephew, etc.]. Pat has already (take out already) received public service awards like (such as) Research!America's 2008 Gordon and Llura Gund Leadership Award, been a finalist for the Nancy Grace Extraordinary Parent Contest and (has) been profiled in publications like the New York Times and Esquire Magazine because she is the one who has overcome the tragedy of losing her two sons and mastered the art of articulating our needs to our government leaders, doctors and scientists world wide. Since she co-founded the non-profit organization, Parent Project Muscular Dystrophy ( http://www.parentprojectmd.org ), the (many) government (s), doctors and scientists have finally begun focusing their efforts on translating academic theory into real treatments that show promise for some of the children afflicted by this curse. This is huge when you consider DMD has afflicted humanity for as long as humans have existed.

If you book Pat then you (Booking Pat) will do a number of good things. She is a brilliant public speaker and advocate and will present extremely well on your show. You will provide a voice for the extremely(all of our) brave children who must (take out must) live knowing (they will get weaker day by day and most of these children eventually realize that they will pass away well before their time. )their muscles die a little more each day. Most of these children eventually realize that they will pass away well before their parents. You’ll also enable Pat to explain to the American public that this is not just some rare affliction that only happens to somebody else's child. ( and what to look for in your child so that they can be diagnosed early.) To the contrary, DMD is the most common lethal hereditary childhood disease on the planet. It does run in families but in two thirds of all diagnosed cases there is no family history. It could happen to anybody.(anyones child) It could happen to your family, randomly with the next birth. Also, you can help your viewers understand that the groundbreaking work of the MDA, Jerry’s Kids, has not been enough. It's going to take more. It's going to take your effort, today to help Pat reach her goal before it is too late for my child.

While I urgently wait for a cure and care for my son, would you please give Pat and DMD families all over the world a voice, a chance to end Duchenne?


Paul Cliff said:
Having been volunteered for this, I submit my efforts for the review and comment of all. Don't tell me its great, I already think that, though I think it could use a little trimming. Tell me it's awful but with a little nip here and a tuck there it might be serviceable. If you seriously think its effective, the credit goes to Cheryl and my friend Brian Hawk who supplied valuable input that focused my efforts.
Paul, attached is my rearrangement of the letter. What a great start. Thanks!

Paul Cliff said:
Thanks. Everybody else? Come on in the water's fine.
Attachments:
Hi Paul:

I will start to work on getting email and snail mail addresses. If anyone has any please send them to me in a private message so that when I list them they will be all in one post so we don't have to search for them.

My bigger concern is how many people are willing to join us? It's been the same people posting. We need enough people to make this work. Do we go with just sending them them out twice a day like Christian suggested or do we get more aggressive?

Paul Cliff said:
Thanks. Everybody else? Come on in the water's fine. Seriously, these are excellent suggestions, and it's probably better for a number of reasons if each of us makes little tweaks to what we send to make it more personal and less susceptible to spam filters when the messages are emailed. Lastly, I have some vague idea that there are dozens of these shows on, but other than Oprah, I couldn't name a single one. Where are we going to send these, and who's going to do the work to dig up the good postal and email addresses?

>
Paul Cliff said:
Having been volunteered for this, I submit my efforts for the review and comment of all. Don't tell me its great, I already think that, though I think it could use a little trimming. Tell me it's awful but with a little nip here and a tuck there it might be serviceable. If you seriously think its effective, the credit goes to Cheryl and my friend Brian Hawk who supplied valuable input that focused my efforts.
I went with a slightly different tact not as much focus on DMD - but instead focusing on the more universal story of turning personal tragedy into one of hope...
Attachments:
It's sounding really good so far good to me. All the suggestions are great! I particularly agree with Jacobs Mommom's suggestions that she inserted into the letter. I really like and agree with those changes. I think something about the MD Care Act should be mentioned as well as the awards. Pat lobbied (probably more than we know) to get the MD Care Act enacted in 2001 and still does to keep it going and get more funding. Here is a bit more bio. info that I googled that might help.

Can't wait to start doing my part in emailing this letter out. I love Dr. Oz on Oprah but come on! He's on their just about every day and by now we know all about anti-oxidants and things to do to help us live a longer life.

http://www.mdawa.asn.au/uploaded/conference_MD2005.pdf

http://www.parentprojectmd.org/site/DocServer/filename?docID=134

Pat Furlong - Ms. Furlong, the mother of two sons with Duchenne muscular dystrophy (DMD), founded the Parent Project Muscular Dystrophy in 1994. Today, it is the largest national grassroots organization devoted to DMD. Ms. Furlong has been a nurse and nurse educator, and was instrumental in the development of the Duchenne Muscular Dystrophy Research Center at the University of Pittsburgh. She has testified before Congressional committees on muscular dystrophy, and was part of the primary team that submitted and actively lobbied for the MD CARE Act.




Jacobs Mommom said:
I tried to insert comments but I didn't know how to save them once I did and I didn't want to wreck your letter.

Just a few suggestions in parenthesis.

I am a [grandparent, parent, brother, sister, aunt, uncle, (etc.)] of _________, age _____, and [he/she] is one of the thousands of children in this country afflicted by Duchenne Muscular Dystrophy (DMD). On behalf of him/her and I am asking that you book maybe interview instead of book) Pat Furlong as a guest on your show because she is our champion in putting out the message (that) there is hope and if all Americans just work together a little harder we can save our [son/daughter/cousin/nephew, etc.]. DMD is (a) hereditary disease (that) puts most children into a wheelchair before (their 16th birthday) they get a driver’s license and kills them (in their mid 20's due to heart failure) at an age where their peers are off to college or starting families. Today, there is no cure. However, we have reason for hope because of efforts from brave and brilliant people, including an unassuming housewife and mother from Ohio, a (an) amazing woman named Pat Furlong. Because of her passion to cure Duchenne we (our boys) have a fighting chance. She was unable to reach her goal in time to save her own two sons, gone 10 years now. Please help her reach this difficult goal in time to save mine and all the others.

I am asking that you book Ms. Furlong as a guest on your show because she is our champion in putting out (sending out) the message (that) there is hope and if all Americans just (would) work together (,) a little harder (,) we can save our [son/daughter/cousin/nephew, etc.]. Pat has already (take out already) received public service awards like (such as) Research!America's 2008 Gordon and Llura Gund Leadership Award, been a finalist for the Nancy Grace Extraordinary Parent Contest and (has) been profiled in publications like the New York Times and Esquire Magazine because she is the one who has overcome the tragedy of losing her two sons and mastered the art of articulating our needs to our government leaders, doctors and scientists world wide. Since she co-founded the non-profit organization, Parent Project Muscular Dystrophy (

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2021   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service