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Richard Darienzo
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  • Brooklyn, NY
  • United States
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Richard Darienzo's Friends

  • Tommy Paine
  • Thomas Hilliker
  • Claire Diemler
  • Anna Mossiat
  • Trinh Nguyen
  • Andrea Cleary
  • Vickie Bielefeldt
  • Donna Cicardo
  • Jason Darienzo
  • Pat Furlong

Richard Darienzo's Discussions

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

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

    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

           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

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

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

 

Richard Darienzo's Page

Latest Activity

Richard Darienzo commented on John D. Porter, PhD's blog post Recapping the FDA-NIH Dystrophin Methodology Workshop
"While this recent meeting between the NIH and the FDA certainly increases Duchenne's visibility within the main stream medical community,  it represents some disturbing…"
Mar 28, 2015
Jason Darienzo replied to Richard Darienzo's discussion Why isn't Duchenne being given same consideration as AIDS?
Apr 15, 2014
Richard Darienzo replied to Richard Darienzo's discussion Why isn't Duchenne being given same consideration as AIDS?
"     Oh no need to apologize Andrea.   Your a huge supporter of my Robotic Exoskeleton for Duchenne facebook group so im big fan of yours.   Well as far as political pressure,  Your aware that The head of the FDA,…"
Apr 9, 2014
stephen beggs favorited Richard Darienzo's discussion Why isn't Duchenne being given same consideration as AIDS?
Apr 9, 2014
Richard Darienzo replied to Richard Darienzo's discussion Why isn't Duchenne being given same consideration as AIDS?
"           Andrea i think i have confused you just a bit.   Im Richard, Jasons brother.  Me and Jason both post so im sorry we did not clear that up sooner.    The change i think needs to be how the…"
Apr 9, 2014
Richard Darienzo favorited Richard Darienzo's discussion Why isn't Duchenne being given same consideration as AIDS?
Apr 7, 2014
Chris Diemler favorited Richard Darienzo's discussion Why isn't Duchenne being given same consideration as AIDS?
Apr 7, 2014
Richard Darienzo posted a discussion

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

    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 is Accelerated Approval. Dystrophin was discovered as the cause of Duchenne in 1987. 27 years later Duchenne can not get one drug. AZT didn't cure AIDS and they barely knew anything about HIV. AIDS desperately needed something, we desperately need something to start raising Dystrophin levels.    The…See More
Apr 6, 2014
Richard Darienzo replied to Jason Darienzo's discussion Whitehouse petition: Urge the FDA to Say YES to Accelerated Approval for children with Duchenne.
"Charley's Fund just posted the following on Facebook.  There was a local news report today in Pennsylvania today.  It seems if there are Duchenne families in the listed areas Charley's Fund can get them on tv to promote the…"
Mar 20, 2014
Richard Darienzo replied to Jason Darienzo's discussion Whitehouse petition: Urge the FDA to Say YES to Accelerated Approval for children with Duchenne.
"Hi Tommy i am actually Jason's brother.  We need exon 45 skipped so how fast things move after exon 51 is something i have looked into.  The way to think of Sarepta is the drug is like a drill and each exon just needs a different…"
Mar 11, 2014
Richard Darienzo replied to Richard Darienzo's discussion The Whitehouse.gov Petition asking the FDA to Accelerate Approval of treatments for Duchenne
"The White House petition to ask the FDA to Accelerate Approval for treatments for Duchenne Muscular Dystrophy has 18,520 signatures. This is 3220 signatures in 19 hours. 4000+ in 24 hours is very possible. Remember we need 4300 a day to make…"
Mar 10, 2014
Richard Darienzo posted a discussion

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

           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 administrative to respond. Please sign and promote this petition by posting in on your  Facebook and Twitter pages and by informing others. Signature update: There are now 17,133 signatures. Im happy to say we have achieved over 1700 signatures in the last 12 hours. It is gaining momentum.  We can do 4000…See More
Mar 10, 2014
Brad Stone left a comment for Richard Darienzo
"Signed!"
Mar 9, 2014
Fred Luchetti left a comment for Richard Darienzo
"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…"
Mar 9, 2014
Fred Luchetti left a comment for Richard Darienzo
"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…"
Mar 8, 2014
Richard Darienzo replied to David's discussion Exon skipping and young men with DMD
"David,       Well that above 30% is referring to the studies observation that above 30% the biological markers that are different in MDX mice returned to normal levels.   Those normal levels presumably would allow all…"
May 11, 2012

Profile Information

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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Comment Wall (6 comments)

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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,
Staff
PPMD
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.
 
 
 

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