THEY WANT US!!!!!!!!!!!!!!

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Hi Tina:

I just sent you a private message. Would you want to be the one to write this up for me?

The intern asked me what my objective of being on the show was and the first thing I said was we don't want any pity. We are not parading Jacob on the stage for anyone to feel sorry for us. We are there to make people aware of what this disease really is and what it does. The signs to look for and that it can happen to anyone. Why it's been so hard to come up with a treatment or a cure and how close we are coming and we just need support and help, not pity.

Now I hope you all can help me.

I have to get everything I want mentioned on the show written up and emailed Monday morning.

I want to explain about why it's been so hard to find a treatment or cure by explaining that even though the illness is called DMD there are different mutations.

Can someone write something up for me with that subect?

Also, The "treatments" that the boys are on now encluding physical stretches, swimming, special equestrians etc?

Of all weekends that Jacob wanted to be with me he picked this one and I have to sort thru pictures and elaborate more on my own story all for tomorrow night.

If you can do it I would suggest that you post that you will do it so not everyone is doing it all at once.

Please email it to me at donna@donnadoolittle.com. Thanks

Tina said:
I too am appreciative of your efforts and success. Thank You.

I only have one request ( if they are being accepted by Parent Project members ).


Please leave the audience and television viewers with the understanding how close we are to helping so many boys with a deletion in the "hot spot" areas, how PTC will make such a difference with 15% of them as well as the hope we have in the very near future that other drugs may help the remaining few.

Anotherwards, I don't want them leaving the program feeling sorry for me. "That poor mother." I want them leaving with the understanding that we need their help...we can make a difference with this generation of boys.... and here is how they can help.
Another thing Donna, its not that we don't want to hear or like to hear the "poor mom (or dad)" syndrome thing-its that people think that because we as families have a disable/sick child that we get away with alot of government help when we don't. I have to constantly remind people that each state is different. While some states can get resources from the government for some help in some things, there are some states who can't get anything, furthermore parents have to make twice as much sacrifices to provide that 24/7 proper treatment and care on their own with very little or no help from the governemnt agencies or medical community.

For instances, there are some states whose citizens pay states, city, local, etc..etc... taxes-so the resources are there. While there are states like Florida, Texas and a few others who don't pay state taxes and all the others.taxes so the resources are NOT there. Some say because Florida is a tourist state we have the resources, when we don't. So we as parents and some who are single parents have work or advocate just as hard to get the attention and care the boys need and don't always get it. And the worse part, most have to give up their jobs, etc...to stay home to care for their children 24/7.

Advocacy for our children is so important because in order to provide them that proper care and treatment, we need the tools, and its hard to get the tools to work with if the resources are not there.

And the other worse part is that the government agencies think we can run to the MDA for evertything when the MDA can't really help us with everything. There is a limited to what can be done and after a while we get tired of the government agencies tell us to run to the MDA.

Hope that makes better sense.
TINA I NEED THIS BY TOMORROW AT 7PM EST AT THE LATEST!!!!!!!!

Tina said:
Hi Donna

I have a suggestion and sent it to you. I have somebody in mind and provided his email address for you . He is an incredible writer, a lobbyist in Washington D.C. and a dad of a Duchenne boy. He is very involved in Duchenne research and has a close relationship with Dr. Eric Hoffman who is feverishly working on developing clinical trials for exon skipping. Let me know if I can be of any other help.
Best of luck. The Duchenne community thanks you.
Kindly,

Tina
I just got done emailing the Dr. Phil show all of the information that they asked for along with pictures. Everyone please pray that everything went thru okay and that I get a call this week.
I'm keeping my fingers crossed and praying!! Your doing a great job!!

Jacobs Mommom said:
I just got done emailing the Dr. Phil show all of the information that they asked for along with pictures. Everyone please pray that everything went thru okay and that I get a call this week.
This is great. I was reading this with palpitations. This is the way.
All the way from south Africa, i just want to say how amazing you are, I have emailed Oprah for over 3years now and no one has ever come back to me. I thought that because oprah love Matti (Stipanik). not sure of spelling, I thought she would love to help our boys, but have never heard a word, but you did it, Dr Phil. We get it in South Africa, and I would just like you to mention that we have Parent project all over the world fighting to survive.
Well done
Maxine
I filled out so many letters for titles of each show that I'm not sure which one they picked up on. I think it could have been on under the title Are you stressed out? so don't think that writing these letters won't work.

I'm still writing to the others and still doing the emails once a day and faxes once a day and snail mail twice a week. We need to keep it up and we need all types of families on these shows.

They called me last Thursday and told me to get the information and pictures to them ASAP because they had a few openings and they didn't want to see us miss out on the opportunity. I wasn't prepared for things to happen that fast and I was running around like a nut all weekend. I have all my family pictures stored on a Zip disc and naturally my zip drive wouldn't open them so I had to scan pictures that I had printed out which took me 5 hours.

Jacob was with me this weekend and wanted to start to make decorations for the Halloween party I said he could have so I was trying to elaborate on our story, Duchenne, PPMD and everything else everyone else wanted me to include while keep Jacob occupied.

If it wouldn't have been for Christian and Paul and Cheryl Cliff coming to my rescue I would never have gotten things together so that I could have everything to them in their email for this morning as I had promised.

If you are going to keep on contacting the shows make sure you have your whole story and pictures ready. I can give you what I wrote about everything else now to add to it.

Now it's a waiting game to see if they like what I sent.
I will help in any way, I have always wanted us to get on a talk show. That is Great!!!!!!!!!
yippeee!!!!!!!!!!!!!!!!! that is aweswome!!!!!! finally!!!!! if the kids werent asleep i'd be jumping up and down!!! let us all know when!
I wanted to give everyone an update so that everyone else can be on pins and needles with me:)

Here is the follow up email that I received after the initial phone call.

From: 'Dr Phil Intern 7'
To:
Sent: Thu Sep 11 11:26
Subject: Fwd: Dr. Phil Show response to letter.




Dear Mrs. Doyle I received your email and am very interested in learning more about your situation. If you can email me back ASAP with the following questions answered that would be great. Please don't hesitate to go into detail......Also, the pictures are very important, so please send some ASAP...

1. Email me recent photos of you and anyone else involved in your story
2. Are you and the other parties (if applicable) willing to appear on the show?
Please send pictures as soon as possible, as we have some deadlines coming soon and would not want you to miss this opportunity! After I get the photos I'll contact you and let you know what the next step is. IT IS VERY IMPORTANT TO STRESS THAT ALL PARTIES INVOLVED MUST BE WILLING TO PARTICIPATE IN THE SHOW. Thanks so much and I look forward to speaking with you!



Best Regards and Thank You

Jasmin
"The Dr.Phil Show"

I sent her everything Sunday evening so she would have it on Monday. I sent her a follow up email yesterday morning asking her if she received everything because I would hate to think that it went thru when it didn't and still nothing.

Now I'm debating if I try calling her at the phone number that I found and posted on the site or do I wait it out?

My nerves are shot!!!!!!!!

In the meantime I'm still sending out letters and I'm still filling in requests for different shows.
Thank you for sharing the e-mail with us and keeping us updated on Dr. Phil. I am definitely on pins and needles with you. Terry

Jacobs Mommom said:
I wanted to give everyone an update so that everyone else can be on pins and needles with me:)

Here is the follow up email that I received after the initial phone call.

From: 'Dr Phil Intern 7'
To:
Sent: Thu Sep 11 11:26
Subject: Fwd: Dr. Phil Show response to letter.




Dear Mrs. Doyle I received your email and am very interested in learning more about your situation. If you can email me back ASAP with the following questions answered that would be great. Please don't hesitate to go into detail......Also, the pictures are very important, so please send some ASAP...

1. Email me recent photos of you and anyone else involved in your story
2. Are you and the other parties (if applicable) willing to appear on the show?
Please send pictures as soon as possible, as we have some deadlines coming soon and would not want you to miss this opportunity! After I get the photos I'll contact you and let you know what the next step is. IT IS VERY IMPORTANT TO STRESS THAT ALL PARTIES INVOLVED MUST BE WILLING TO PARTICIPATE IN THE SHOW. Thanks so much and I look forward to speaking with you!



Best Regards and Thank You

Jasmin
"The Dr.Phil Show"

I sent her everything Sunday evening so she would have it on Monday. I sent her a follow up email yesterday morning asking her if she received everything because I would hate to think that it went thru when it didn't and still nothing.

Now I'm debating if I try calling her at the phone number that I found and posted on the site or do I wait it out?

My nerves are shot!!!!!!!!

In the meantime I'm still sending out letters and I'm still filling in requests for different shows.

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