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Chance to raise awareness about MMD (Read 6393 times)
yunnanababy
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My daughter had her surgeries
in October 2009

Posts: 137
Indianapolis, IN  USA
Gender: female
Chance to raise awareness about MMD
Sep 16th, 2009 at 12:45pm
 
Hello,

I have posted similar information on the Guestbook, but thought I would give it a go on the message boards as well to continue to spread the word.

The TV show, The Doctors, is currently allowing viewers to submit ideas for topics that we think the show should produce.  Therefore, I have submitted Moyamoya Disease as a potential on-air topic for the show.

I know many are of the opinion that MMD is often misdiagnosed and my thinking is that if we can raise awareness of the disease thru a national TV program, perhaps lives could be saved in the future.  I have no connection to the program or affiliation with the show.

If you'd like to vote for MMD as a potential topic for this show, please visit http://www.thedoctorstv.com/produce/vote?page=35.  Viewers are adding new topics all the time, so if this link takes you to a page that does not include MMD, look at the panel on the left side of the screen, select "Disease & Illness" and then begin looking for MMD at page 36 & beyond.  (Each time a new topic is added, former topics get moved further down the list in terms of position.)

Best regards,

Jennifer
Mommy to a 6 y/o with MMD
www.caringbridge.org/visit/rubymaejingli

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Mom to an 9.5 y/o ballerina/guitar player with MMD & an 11.5 y/o gymnast/cross country runner/swimmer!
www.caringbridge.org/visit/rubymaejingli
WWW 1422039771&ref=profile  
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Mayhem
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diagnosed 1996

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Rochester, USA, NY, New_York
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Re: Chance to raise awareness about MMD
Reply #1 - Sep 16th, 2009 at 12:59pm
 
Great idea, and I voted.
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yunnanababy
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My daughter had her surgeries
in October 2009

Posts: 137
Indianapolis, IN  USA
Gender: female
Re: Chance to raise awareness about MMD
Reply #2 - Sep 16th, 2009 at 2:14pm
 
It looks like I goofed on the page number if you have to search for MMD through the "Disease & Illness" link on the side of the screen, MMD is currently on PAGE 10 (not 35 as previously reported).  My humble apologies...and thank you for taking time to vote!

Jennifer
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Mom to an 9.5 y/o ballerina/guitar player with MMD & an 11.5 y/o gymnast/cross country runner/swimmer!
www.caringbridge.org/visit/rubymaejingli
WWW 1422039771&ref=profile  
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Mayhem
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diagnosed 1996

Posts: 92
Rochester, USA, NY, New_York
Gender: male
Re: Chance to raise awareness about MMD
Reply #3 - Sep 16th, 2009 at 8:11pm
 
yunnanababy wrote on Sep 16th, 2009 at 2:14pm:
It looks like I goofed on the page number if you have to search for MMD through the "Disease & Illness" link on the side of the screen, MMD is currently on PAGE 10 (not 35 as previously reported).  My humble apologies...and thank you for taking time to vote!

Jennifer

I found it without too much trouble.
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Mar
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Re: Chance to raise awareness about MMD
Reply #4 - Sep 16th, 2009 at 10:09pm
 
Great idea Jennifer! Any chance to raise awareness is really needed, and a TV episode about MMD would be fantastic!! It just may save a life. I hope everyone makes the effort to vote to get this disease recognized for a topic on the show.

Thanks for posting this great idea Jennifer! Smiley

Mar
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Becky
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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female
Re: Chance to raise awareness about MMD
Reply #5 - Sep 17th, 2009 at 12:24pm
 
AWSOME idea!! I voted.

I remember someone was trying to get on Opera a while back maybe someone should try agian. I don't think my story is compelling enough to get intrest but maybe someone who had to go through alot or someone younger.

Knowlage is power!
Becky
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What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar.     STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic
 
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Mayhem
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diagnosed 1996

Posts: 92
Rochester, USA, NY, New_York
Gender: male
Re: Chance to raise awareness about MMD
Reply #6 - Sep 17th, 2009 at 8:36pm
 
A couple of years ago, I think, there was something on Discovery Health network that dealt with pediatric MM. It may have been Mystery Diagnosis, or another of those shows. No offense to those who are parents of MM kids, but I would like to see something about adults with MM.
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Entesar S.
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My nieces Joad has MM

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UK
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Re: Chance to raise awareness about MMD
Reply #7 - Sep 18th, 2009 at 4:16am
 
What a brilliant idea
I have already voted for the topic
Smiley
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Surgeries done at Stanford
Doing Fantastic
Needs physical therapy
 
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mg12061
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Posts: 946
Albany, USA, usa, 492, 84, NY, New_York
Gender: female
Re: Chance to raise awareness about MMD
Reply #8 - Sep 21st, 2009 at 9:43am
 
This is an awesome idea.The only problem is finding the page with moyamoya.I've searched a few times through many pages and didn't find it.I would love to pass thsi along to an e-mail group devoted to pediatric stroke because it would also educate the public and Dr.s to the fact that children do have strokes. The only problem is I think people with have trouble finding the page in order to vote and will give up....Is there any easy way to get dirctly to the disease your looking for?
Mary Grace
PS I could also send it to friends and famiily to vote if I can help them to get directly to the moyamoya page.
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rgrace5  
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yunnanababy
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My daughter had her surgeries
in October 2009

Posts: 137
Indianapolis, IN  USA
Gender: female
Re: Chance to raise awareness about MMD
Reply #9 - Sep 21st, 2009 at 10:59am
 
Mary Grace,

I haven't been able to determine a way to link directly to the specific disease.  As soon as a new topic is added, every existing topic moves "down" in position on the list, so the page number is changing continuously as viewers add new topics. 

Jennifer
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Mom to an 9.5 y/o ballerina/guitar player with MMD & an 11.5 y/o gymnast/cross country runner/swimmer!
www.caringbridge.org/visit/rubymaejingli
WWW 1422039771&ref=profile  
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Skay5709
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I Love MM.com!

Posts: 60
Re: Chance to raise awareness about MMD
Reply #10 - Sep 21st, 2009 at 11:37pm
 
I have tried several times to vote but the page number keeps changing. I would like to vote but having a problem with the site
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yunnanababy
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My daughter had her surgeries
in October 2009

Posts: 137
Indianapolis, IN  USA
Gender: female
Re: Chance to raise awareness about MMD
Reply #11 - Sep 22nd, 2009 at 10:40am
 
Try this link...

http://www.thedoctorstv.com/produce/idea_comment/480

Jennifer
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Mom to an 9.5 y/o ballerina/guitar player with MMD & an 11.5 y/o gymnast/cross country runner/swimmer!
www.caringbridge.org/visit/rubymaejingli
WWW 1422039771&ref=profile  
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Michele
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I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
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Re: Chance to raise awareness about MMD
Reply #12 - Sep 22nd, 2009 at 5:26pm
 
I voted for MMD too!  I had to start at page one and go page by page until I found it, as the position changes like you said with more additions. Worth the time though!  Wink
Michele
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mg12061
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Posts: 946
Albany, USA, usa, 492, 84, NY, New_York
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Re: Chance to raise awareness about MMD
Reply #13 - Sep 22nd, 2009 at 7:40pm
 
  The new link works great, it takes you directly to the moyamoya page.It's very easy creat a password and username and vote leave a message too! Maybe you can send the link to friends and family so they can vote too.Wouldn't it be great to get the word out in a big way!!!! I'm always looing for a way to educate someone aobut this disease now we all can. Thanks Jen for starting this.
Mary Grace
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rgrace5  
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