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David
  • Male
  • Fair Oaks, CA
  • United States
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David's Discussions

Idebenone / Raxone from Masters - DON'T BOTHER

Started this discussion. Last reply by Rahul Deshpande Jan 21, 2016. 1 Reply

Capitalism in action, enough to make you want to throw up! Masters is now selling Idebenone (renamed to Raxone) as a prescribed pharmaceutical. I presume that they received some sort of special…Continue

Bring on the capitalists!

Started Apr 25, 2015 0 Replies

Yes it is important to raise awareness of research and charitable events.But, don't fall to mention the money to be made! The latest reports are rather impressive, and we all know what motivates many…Continue

OSU Eplerenone and ACE/ARB combo trial results released

Started this discussion. Last reply by David Dec 31, 2014. 5 Replies

With no medical authority whatsoever, just a parent here, I strongly suggest to every parent out there with a boy >10 to look into this.…Continue

 

David's Page

Latest Activity

David replied to Keith & Jill VE's discussion Emflaza (aka deflazacort) Approvals
"*6 weeks ago"
Sep 15
David replied to Keith & Jill VE's discussion Emflaza (aka deflazacort) Approvals
"6 else later, still no response from insurance. Anyone else any luck?"
Sep 15
David replied to Keith & Jill VE's discussion Emflaza (aka deflazacort) Approvals
"United Healthcare has been reviewing my sons app for a month, no response. Ive little hope they will approve."
Jul 22
David commented on PPMD's blog post Capricor Therapeutics Announces Positive Six-Month Results from the Randomized Phase I/II HOPE Clinical Trial in Duchenne Muscular Dystrophy
"When an all-star, hands down hall of famer joins your favorite team, it's a great…"
May 22
David commented on PPMD's blog post PTC Therapeutics to Discuss Launch Plans for Emflaza™ (Deflazacort) during Community Call on Monday, May 8th at 3:00 PM EDT
"Nothing less than corporate moral bankruptcy"
May 8
David is attending PPMD's event
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[Upcoming Webinar] Results from Phase I/II HOPE Clinical Trial of CAP-1002 at Online Webinar - Eastern Time Zone

April 28, 2017 from 11am to 12pm
Friday, April 28 at 11:00 AM ESTPlease join Parent Project Muscular Dystrophy, Coalition Duchenne, and Capricor as we host a webinar Friday, April 28 at 11:00 AM EST to hear a community update on the six-month results from Capricor's randomized Phase I/II HOPE Clinical Trial of CAP-1002 (allogeneic cardiosphere-derived cells), an investigational candidate for the treatment of Duchenne.Hosts:Cath Jayasuriya, Founder and Executive Director, Coalition DuchenneKathi Kinnett, SVP Clinical Care,…See More
Apr 26
David commented on PPMD's blog post Capricor Therapeutics Announces Positive Six-Month Results from the Randomized Phase I/II HOPE Clinical Trial in Duchenne Muscular Dystrophy
"First good news for older patients in a long time. Any ppmder insiders at Cedar Sinai? I'll drive to LA in a heartbeat to be a part of this."
Apr 25
David commented on Pat Furlong's blog post FDA Grants Accelerated Approval to First Drug for Duchenne Muscular Dystrophy
"Every parent with boy amenable to exit 51 skip knows who to thank the most, and it's you Pat!"
Sep 19, 2016
David favorited Pat Furlong's blog post FDA Grants Accelerated Approval to First Drug for Duchenne Muscular Dystrophy
Sep 19, 2016
David favorited Pat Furlong's blog post FDA Grants Accelerated Approval to First Drug for Duchenne Muscular Dystrophy
Sep 19, 2016
David replied to Jason Darienzo's discussion Sarepta Therapeutics shares jump on news of critic’s departure from FDA
"Three cheers for Janet Woodcock! She gets rid of Farkas and just days later we have accelerated approval!!!!"
Sep 19, 2016
David replied to Jason Darienzo's discussion Sarepta Therapeutics shares jump on news of critic’s departure from FDA
"Good riddance! Hopefully he will stay away from all medicine for good. A disgrace to the profession!"
Sep 14, 2016
David is attending PPMD's event
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[Upcoming Webinar] What is CRISPR/Cas9? at Online Webinar - Eastern Time Zone

July 13, 2016 from 1pm to 2pm
Wednesday, July 13th at 1pm easternYou’ve seen the headlines and heard the name, now find out more about CRISPR/Cas9 and what this technology could mean for Duchenne. PPMD welcomes Dr. Eric Olson from the Department of Molecular Biology at UT Southwestern Medical Center to discuss the basics of gene editing and the potential permanent correction of Duchenne mutations with CRISPR/Cas9.Speakers:Abby Bronson, SVP, Research Strategy, Parent Project Muscular DystrophyDr. Eric Olson, Department of…See More
Jun 17, 2016
David replied to Holly Homa's discussion refusing to use the bathroom
"My boy went through this too. He had a really loud bathroom in kindergarten and it freaked him out for years after. We tackled it head-on, but it took a while.Settled down by 5th grade ... good luck"
Jun 2, 2016
David favorited PPMD's blog post PPMD Advocates Ensure Congress Recognizes Importance of Flexibility in FDA Reviews
Apr 20, 2016
David favorited Kevin Freel's discussion NICE Recommends Translarna
Apr 17, 2016

Profile Information

About me:
Father of a DMD boy
About my family:
Son, 11 Joe
Daughter, 9, Maddie
Name(s) of child(ren)/individual(s) with Duchenne:
Joe
Age(s) of child(ren)/individual(s) with Duchenne:
13-18
City:
Sacramento CA

Comment Wall (11 comments)

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At 9:23pm on September 3, 2011, Joshua's mom said…

Hi David,

 

You probably never expected the world to be this small!!  I'm so glad you talked to him.  He's one of the best advocate doctors you will know.  You are more than welcome.  We are all DMD family.

At 11:39pm on August 23, 2011, Joshua's mom said…
A few years ago he came here to Canada.  He then went back to Sacramento in October of last year.  I did find a link for him in San Diego.  Dr. Skalsky  No doctor we've met is as optimistic as he was.
At 8:19pm on August 21, 2011, Joshua's mom said…
Here is the link to  Dr. Skalsky.  Everyone here, in Manitoba, virtually cried to see him go.  He was the first on who actually knew the deletions & duplications the kids had before we met him.  He knew more about DMD than the geneticist did!  He was also the one who pushed for Idebenone here in Canada.  That was the main reason why he came here.  Most all DMD kids are now on Idebenone because of him!!
At 1:40pm on August 21, 2011, Joshua's mom said…

Hi David, I saw your post on Idebenone regarding your son's doctor suggesting it.  I also see you are close to Sacramento.  The doctor we had here who suggested Idebenone has moved back to Sacramento.  His name is Dr. Andrew Skalski.  I just had to ask if you are familiar with him or his team?

Naomi

At 10:58pm on January 18, 2011, Nguyen Van Anh said…

Hi David,

Oh, really, I didn't remember. I'm sorry for my mistake.

And I'm very happy to be your friend. .

But there're one thing, I want to ask you why your son need exon 17,18 skipping? I think it should be exon skipping 17 only.

Thanks

Van Anh

At 9:20pm on January 12, 2011, Nguyen Van Anh said…

Hi David,

My son needs exon 17 skipping (he has delection of exon 18-25), and in your comments left on delection group , you mentioned about Katerina with exon 17 skipping. Please send me her contact. I really want to find someone with my boat.

Thanks

Van Anh

At 1:35pm on November 29, 2010, cheryl cliff said…
David,
Please contact me at cherylcliff@gmail.com. I have some information you might find helpful regarding your seeking an IND.
At 3:48am on July 8, 2010, RAKTIM SINGH said…
Thanks very much David for the information on ACE-031.I am praying for the success for ACE-031 as that will help all DMD kids.

Thanks once again.
MAY GOD BLESS YOUR FAMILY.
Raktim
At 9:34am on July 7, 2010, RAKTIM SINGH said…
Hi David,
Do you any information on ACE-031. Personally I am quite excited about that. This surely can give our kids some more strength, muscles and time(especially in the light of latest delay in exon trials in US).

I am aware of ACE-031's canada's PH2 trials. Are there any planned in US also. Any other info related to this will surely help.

Thanks
MAY GOD BLESS YOUR FAMILY.
Raktim
At 10:06am on June 30, 2010, RAKTIM SINGH said…
Thanks David for the information. So as I understand, cocktail of medicine which can skip more than 4 exons can be less efficient (but hopefully 2 exon skipping cocktail can still work.)
Thanks once again.

Raktim
 
 
 

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