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Richard Darienzo Male Brooklyn, NY United States: Favorite

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Why isn't Duchenne being given same consideration as AIDS?

Started this discussion. Last reply by micro kid May 6, 2014. 8 Replies 4 Favorites

Duchenne Muscular Dystrophy needs treatments immediately. In that context, consider this: In early 1984, HIV was discovered as the cause of AIDS. In March 1987 AZT was approved by the FDA.. That…Continue

The Whitehouse.gov Petition asking the FDA to Accelerate Approval of treatments for Duchenne

Started this discussion. Last reply by PPMD Mar 11, 2014. 2 Replies 0 Favorites

The White House petition to ask the FDA to Accelerate Approval for treatments for Duchenne Muscular Dystrophy has 17,515 signatures. and needs 100,000 by March 29th for the Obama…Continue

Robotic augmentation of human strength.

Started Mar 31, 2012 0 Replies 0 Favorites

This is a video about MIT researcher Hugh Herr. He is the director of the Biomechatronics group at The MIT Media Lab. Mr Herr is also founder of iWalk a company that makes a robotic prosthetic ankle.…Continue

Adapting Robotics Technology for Amputees and the paralyzed to Duchenne

Started this discussion. Last reply by Thomas Hilliker Mar 24, 2012. 1 Reply 0 Favorites

Please take a look at a new Facebook Group about Duchenne. You may have heard about new robotic arms for amputees. You may have also heard of robotic legs for those paralyzed below the waste.…Continue

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About me:: Im 36 with DMD. I am a stock market trader. I work from home my brother Jason Darienzo who also has Duchenne.

Name(s) of child(ren)/individual(s) with Duchenne:: Richard Darienzo

Age(s) of child(ren)/individual(s) with Duchenne:: 19 or older

City:: Brooklyn

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At 6:53pm on March 9, 2014, Brad Stone said…: Signed!

At 1:28am on March 9, 2014, Fred Luchetti said…: First off, when I took a look at your page I noticed reams of comments on this website's threads which were all copy pastes. This behaviour is frowned upon for several reasons. Site admins want to keep threads on topic. Derailing a thread like that is just bad manners. More importanly however (and this is the big why of forum admins not liking copy and paste), search engine spiders take a look at repetitive text and will downgrade a site because of it.

Exon skipping medications like the one you are mentioning as well as Ataluren (PTC-124) will work on only a small segment of DMD patients. My son as an example cannot be helped by Ataluren so I gather that the drug you are mentioning will not work either. My son's mutation is not a skip or a nonsense type of mutation, it is completely random. In his case only a gene therapy that will replace the entire gene could even be considered.

Back to your call to arms... By creating your own thread it will draw attention to your cause and it will be seen by a great many people. I read this site religiously and contribute less so, because it is only as a community that we will put an end to this disease.

At 9:12pm on March 8, 2014, Fred Luchetti said…: Spam is a tactic of copying and pasting the same comment on multiple threads that were not started by you. There is a right way and a wrong way to champion a cause, you just chose the wrong way. By now the admins have deleted your posts so again I counsel, start your own thread. Also, being 35 with Duchennes I would much rather hear about your journey rather than a cause which has no hope of any short term effect.

At 2:10pm on March 30, 2012, Trinh Nguyen said…: Dear Richard,
Thanks for your joining. So emotional to know
you are in your 30s.
You light my hope.
Trinh

At 10:25am on March 26, 2012, StaffPPMD said…: Welcome Richard! We hope using the community site to connect with families all over the world to share stories, news, and information about Duchenne is empowering for you and your family.

Please don't hesitate to contact us by phone, email, or message if you ever need anything -- 800-714-5437 - community@parentprojectmd.org

And if you haven't already, we hope you consider registering on PPMD's main website. Registering allows us to send you e-newsletters, additional web-based research reports, and other information specifically targeted for members of the community.

At 4:21pm on March 24, 2012, Thomas Hilliker said…: Thank you for adding me. Your brother responded to my duscussion and I thank him for that. It is refreshing but scary to know that you guys are in your 30, I hope my son can hold on that long even if I cant.