FOUNDATION TO ERADICATE DUCHENNE

The Foundation to Eradicate Duchenne (www.duchennemd.org) put out this video to bring attention to the state of duchenne muscular dystorphy research and funding needed to bring about a treatment. This video was posted by genmedlabmom.blogspot.com.

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• GENMEDLABMOM

[Electrome]

my name is john ive got Dechenne Muscular Dystrophy im 23 years old now and i can still crawl and lift objects but im starting too get really weak now the doctor's still don't know what part of my gene is missing i'm glad that people like you guys are helping find cures too someday find a cure for all of us guys with this terrible illness thanks.

[genmedlabmom]

Dear John, Thanks for taking the time to look at our video. You are amazing, still moving around like you are. We're working as fast as we can.

Marie

[Patroels]

(continued)

Why not add an "S" to the name, making it FOUNDATION TO ERADICATE DUCHENNE'S ?

Now, those who haven't got a clue will ask "Duchenne's -what?" instead of asking "Duchenne -who?"

What do you think?

All the best to you and yours, from Denmark

:-)

[genmedlabmom]

You're a funny guy!

And I'm glad you sympathize with our efforts. FED has done much to advocate for change - fundraising, working on the MD-Care Act, talking with government officials and the like.

How is your son? You must be excited about the work going on over there with exon skipping. Take care.

Marie

[hdiho]

Your video is awesome & the information is so helpful Thank you for sharing! My beautiful 8 year old Grandson has been diagnosed with Duchenne Muscular Dystrophy. The past 6 1/2 years we were lead to believe he had Autism. When he was very young he was said to be a slow developer by his DR.s. How can a child slip through the cracks and it take 8 years to get correct diagnoses? Please pray for my Grandson, family, a cure and for all those who suffer from MD.God Bless Your Family!Yes One More Day!

[genmedlabmom]

thank you for your kind words. and thank you for sharing about your grandson. We'll remember him and you in our prayers

[Robtheboy3]

ive been doing a report on muscular dystrophy  and my job been doin fundraiser for it and evertime i see the little ones it brings me to tears.. i hope and pray that they find a cure because its so sad to see my heart goes out to all the family dealing with this ..

[Patroels]

I'm happy you look at it like that :-)

Not only am I exited 'bout exon-skipping, I'm also exited 'bout plasmid-treatment. Only don't ask me to explain it /LOL.

My son's fine, thanks for asking. He'll begin in a new daycarecenter soon, instead of the kindergarden where he used to go. A bit anxious about how the "healthy" kids will recieve him, though. Oh well, nothing I can do anything about, eh?

[Patroels]

What a great initiative that is being shown here by the parents, in starting different org's to help fund research. As a father of a 6 year old DMD-kid, you'll understand that my sympathy with the idea is 100%.

However, I must mince words here and I hope you'll appreciate that it's only a minor -but important- detail:

You are calling it FOUNDATION TO ERADICATE DUCHENNE. [Devil's advocate] What has the Duchenne family done, since you want to eradicate them? [Devil's advocate]

[sweet41999]

This video was helpful. My 2 boys have Duchenne MD. I hope a cure is found soon. They R 9 and 7. Please pray for them and all the others. One more day with them would mean the world. Thanks for helping to get the message out there!