To anyone who has not seen or heard of the dvd Darius Goes West should order it and watch it. Its a great movie that shows an inside look into Duchenne. This year they need to sell a million copies so if you have not ordered it yet please do! Go to www.dariusgoeswest.org

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Hello, Keith I firmly believe all of us parents of Duchenne boys are on the same page.....this is truly a devasating disease and it doesn't come with a homeowners manuel per say.....I just know that it needs to be right up there with cancer ( as cancer isn't the only devastating disease out there....we go thru the same feelings as families living the Cancer Journey....and what hurts is we hear of miracles everyday of cancer survivors ( my grandmother was one twice, a elderly lady I am friends with as I took care of her husband before he passed also has survived cancer twice, a high school friend in a survivor....sadly there are no miracle stories of anyone surviving and form of MD ). So, I feel we should have the right to when we tell our sons what they have and what it means, but, if Darius and his crew can shed some light to a population of people ( why, not our sons peers, they are the ones growing up with our boys and itwill help them understand what their DMD classmates are going thru, and with this education if presented the right way ( where we can help is to be there when the DVD is shown and to answer questions, so to prevent misinformation to spread re: DMD or any other form of MD ). Just think of families like Darius who have more than 1 son with DMD, the second boy has to learn what he has by watching their older brother deteriorate infront of them thus learning first hand right in front of their eyes what their future holds.....Darius has had to do this and look at what he is trying to do....I highly commend him for trying to teach the world about DMD....we don't have all the answers on how to get the world to know about this disease.....so, if we keep hush hush like it has been and people don't know what MD is still today.....they call it MS ( because they are uneducated about MD ).....Poster Childen and Goodwill Ambassadors for MD are out there in the public eye and hear things said and when they do this is when it is our job as their parent to just be honest....tough as it will be, we have to do it....it isn't any easier for me with Adam being 23 than it is with a younger family.....difference is Adam is at the age when people really know what dying means....leaving behind others, younger boys do not have this conception of dying due to their age....they do not know it as we adults do.
It is very hard, I don't have the answers.....I just hate DMD like you and the other parents of Dchenne sons!
This is why I say be honest, as our sons will hear things sometimes before we want them too and then we have to explain before we thought we were ready to do so...and the explaining will be that much harder as we will have to disclaim any false things that they may have heard.
Like I said this Journey that we have been sent on doesn't come with any Homeowners manuel or instructions....wish it did, but it doesn't.....it is just a very hard Journey a Journey none of want to be on.....I just know that children with cancer know what they have, how can they not from all the publicity they get and the treatments they are put thru.

Happy Spring Keith to you and your family,
Cheryl

te>Keith said:
I think we're actually on the same page, Cheryl.

My son knows he has MD, and we're learning as we progress on the "journey". Like how he learned this year that he couldn't play baseball any more because he's too weak. Or that he needs a step stool to get on the bus now because he can't climb up. Or that some kids with MD need wheelchairs. Learning, and being truthful as we go, is what feels right to me, and how our doctors have suggested we proceed. I don't think there's a need to jump to the end of the story prematurely - which is what I feel distributing this movie to schools can promote. Hey, I personally have hope and pray every day that we don't even know what the end of the story is for younger boys.

Good talking with you about this today, and I truly appreciate your insight on this board, on all topics, as a parent of an older boy.
Ivy Scherbarth said:
Does anybody know if there is a plan to show DGW at the PPMD conference this year? Especially since it is close to where Darius is from, being in Atlanta ....
i recently got the copy of DGW from my school where I teach. I was very pleased to see a note on the CD cover that advised school personnel to discuss this movie with any parent of a boy with DMD and to be sensitive to their awareness level before showing it to the general population. Those are not the exact words, but basically what it said.
Lori Ware said:
i recently got the copy of DGW from my school where I teach. I was very pleased to see a note on the CD cover that advised school personnel to discuss this movie with any parent of a boy with DMD and to be sensitive to their awareness level before showing it to the general population. Those are not the exact words, but basically what it said.

That's very interesting info, thanks for posting that, Lori. CF and DGW didn't respond at all when I emailed them my concern after they first announced the school program. I'm glad they're at least considering the potential impact on families.
RESULTS OF DARIUS "DO SOMETHING" AWARD
GO DORITOS! GO DARIUS! GO AWAY,DUCHENNE!
Thanks to those of you who voted for Darius. He did not win the $100K but he did win the popular on-line vote! I guess there was some kind of an electoral vote that overruled.
Also, thanks to those of you who commented on my blog -- somehow when I went to approve them they vanished. I have not mastered how to participate on this site.
Anyway, unexpectedly and happily, Darius received the following:
Darius was given $10K for Duchenne research but there's more:
MTV will give Darius and Duchenne some great coverage. As Darius says, "We need all the press we can get". Raising awareness is a HUGE issue and awareness results in action.
Darius and Doritos (read article below). Maybe everyone who loves Doritos will become aware and take interest in our effort to find a cure.
Please read article below and copy and paste the link in your browser. It is encouraging:
Earlier this week, Darius and four other winners of the prestigious Do Something! Awards were honored. The ceremony took place at New York’s famed Apollo Theater. Take a look at MTV News coverage of the event in the box above, which appeared on MTV.

Rapper-actor-entrepreneur Nick Cannon presented Darius with the award, praising Darius as an agent of change. Then, in another surprise, MTV News’s anchorman Sway came on-stage to announce some more exciting news: in September, MTV 2 and MTVU will air Darius Goes West, and MTV will donate $10,000 to Charley’s Fund.
Note: This, like PPMD funding, goes toward Duchenne research to help our boys.

Darius didn’t win the $100,000 grand prize (despite your magnificent efforts, which ensured that Darius did win the on-line vote that made up part of the selection process). However, Darius and crew are extremely excited about MTV becoming a partner in the fight against Duchenne muscular dystrophy. Come September, we’ll count on our supporters (that’s you!) to help us maximize the impact of this opportunity.

Check out MTV’s coverage of the award, and Darius in particular, here. Also, a blog covering the event will come soon. If that link doesn't work, copy and paste this link in and be sure and watch the videoclip:

http://www.mtv.com/news/articles/1613386/20090605/index.jhtml

The good news didn’t stop there: in another sign of Do Something’s support of its winners’ initiatives, we learned that Darius will appear on every regular-sized bag of Doritos chips! Starting around the same time as the MTV appearance, a picture of Darius and a brief explanation of his cause will be on all the 99-cent bags of Doritos—for a whole year!

Thank you, Do Something, MTV, and Doritos, for understanding D’s mission, celebrating his hard work, and partnering with him in the future!




Keith said:
Lori Ware said:
i recently got the copy of DGW from my school where I teach. I was very pleased to see a note on the CD cover that advised school personnel to discuss this movie with any parent of a boy with DMD and to be sensitive to their awareness level before showing it to the general population. Those are not the exact words, but basically what it said.

That's very interesting info, thanks for posting that, Lori. CF and DGW didn't respond at all when I emailed them my concern after they first announced the school program. I'm glad they're at least considering the potential impact on families.
Will the Doritos bag promotion include a web link for more information? Will the link go back to DGW or CF?

Awesome news.

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