I JUST GOT A PHONE CALL FROM THE DR. PHIL SHOW
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Permalink Reply by Jessica Rownd on
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That's fantastic. Keep us posted, especially if you need anything else.
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Permalink Reply by Terry Porcaro on
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They want us??? I'm sitting here with my mouth open! What did they say? Terry Porcaro
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Permalink Reply by Karen Barnett on
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I am so thrilled!! That is great!!
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Permalink Reply by Jennifer Shumsky on
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Holy Cow!!!!!!! Great Job to everyone that took part in this! I'm ashamed to admit I kept meaning to take part and didn't get there yet...but thanks to all of you that did! I am so proud to be part of this great community!
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Permalink Reply by Jennifer Collier on
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YAY!!!!!! Wonderful news!!! Do you know when?
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Permalink Reply by Jacobs Mommom on
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I just received a follow up email from the intern who called me. We need to get pictures to her and information. I've just spoken to Pat and she will be calling me back to discuss it further. We are all just so excited. She asked if Jacob would be allowed on the show and I told them that it was up to my daughter and son-in-law. I told her that Jacob doesn't know everything so he wouldn't be able to be on the whole show but he could tell them about his muscles getting weak and why he can't run as fast as others and why he takes his medicine. I told her that we could have families with older boys on too who could talk about it more. I just heard from my daugther and they said the that they will all go on the show with me for Jacob.
I sent so many different letters to them that I'm not sure which one they were referring to but they want me to tell my story (about finding out about Jacob) and then go from there with Pat and I told them we could have whatever researchers or doctors they would want and my daughter mentioned that Josh Winfield might be good to promote his book since the money goes to PPMD.
We will probably want a few more families and we are going to meet to figure it all out and get everything together tomorrow afternoon so that we can send them everything they asked for all at once.
She said to get the info to her asap since apparently they have some openings for shows coming up.
I will let you know more when I know more.
Terry Porcaro said:They want us??? I'm sitting here with my mouth open! What did they say? Terry Porcaro
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Permalink Reply by Ofelia Marin on
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Good Job!!!!!
Let us know when the show is scheduled. One thing that might be helpful is if you can mention about the pilot study they are conducting for newborn screening in Columbus, OH. That is how we found out about our son -- I have no family history and am not a carrier. People should learn that anyone can have a child with DMD and that newborn screening would be helpful.
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We have to keep this up and keep this going! If all of us keep emailing every week and we can get some friends and family to send them as well I'm sure we'll get other shows interested.
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I'm hoping that we can get the public service announcement with Olympia Dukakis played on the show as well.
Ofelia Marin said:Good Job!!!!!
Let us know when the show is scheduled. One thing that might be helpful is if you can mention about the pilot study they are conducting for newborn screening in Columbus, OH. That is how we found out about our son -- I have no family history and am not a carrier. People should learn that anyone can have a child with DMD and that newborn screening would be helpful.
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I agree, I'm still going to keep going with the other shows. They did a 3 way networking fundraiser for cancer. You just never know:)
Karen Barnett said:We have to keep this up and keep this going! If all of us keep emailing every week and we can get some friends and family to send them as well I'm sure we'll get other shows interested.
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Yes! I agree this would be a great thing to mention. I am not a carrier as well and this is nowhere in my family. My son was a spontaneuos mutation. This can happen to anyone. It should be part of the prenatal testing.
Ofelia Marin said:Good Job!!!!!
Let us know when the show is scheduled. One thing that might be helpful is if you can mention about the pilot study they are conducting for newborn screening in Columbus, OH. That is how we found out about our son -- I have no family history and am not a carrier. People should learn that anyone can have a child with DMD and that newborn screening would be helpful.
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