Fred Luchetti
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  • Oak Ridges, Ontario
  • Canada
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Fred Luchetti's Discussions

Fat Embolism

Started this discussion. Last reply by Kathi Kinnett Jan 21, 2014. 4 Replies

We just found out of a huge danger to DMD kids that we were previously unaware. A Fat Embolism is when fat from inside the bone is released into the bloodstream following a break. These embolisms…Continue

 

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Profile Information

About me:
I am the father of a happy and healthy 19 year old Duchennes Muscular Dystrophy child. He is in his first year of collage.
Name(s) of child(ren)/individual(s) with Duchenne:
Kyle
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
City:
Oak Ridges
State:
Ontario

Comment Wall (2 comments)

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At 10:26pm on March 8, 2014, Richard Darienzo said…

Fred i apologize if you felt i was trying to take over your discussion that was not my goal.  I simply was trying to inform as many people as possible.  I understand your feeling that a petition in and of itself can be completely useless.  In most cases i agree with you.  However in this case i want to just tell you.  The Obama administration created a way to petition the Whitehouse.  According to Whitehouse.gov if a petition reaches 100,000 signatures they have committed themselves to responding.  So i dont believe they will respond with a "no."  Again i apologize but if you haven't please check the petition out don't dismiss it because of my actions.

http://theracetoyes.org/

https://petitions.whitehouse.gov/petition/urge-fda-say-yes-accelerated-approval-safe-effective-therapies-children-duchenne/qtRww0rN

At 8:49pm on March 8, 2014, Richard Darienzo said…

I have Duchenne gentlemen.  Check the DuchenneConnect registry. Richard Darienzo look it up.  Im 35 years old im living on borrowed time. It isn't my petition it was created by Charley's Fund and it is all our petition.  Haven't you heard of exon skipping and the drug Eteplirsen made by Sarepta.  Your sons could be taking it now and delaying loosing there childhood.  The FDA is delaying approval by at least two years.  This despite the advice by Dr Louis Kunkel who discovered dystrophin. I remember when dystrophin was discovered in 1987.  I remember promises of gene-therapy.  You ever think when you were 12 "mabe ill be cured by 17 so i can play baseball"  So that isn't spam that is another weapon to get a treatment started and start saving lives. So ill "spam" wherever i want.  This is the most critical issue of the moment 

 
 
 

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