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

Lung function equipment and training

Started May 27 0 Replies

My son will miss the only trial that I can find that just may give him more time because his fvc score is below their magic number. While the tragic irony of this fills me with rage, I'm again left…Continue

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

 

David's Page

Latest Activity

David posted a discussion

Lung function equipment and training

My son will miss the only trial that I can find that just may give him more time because his fvc score is below their magic number. While the tragic irony of this fills me with rage, I'm again left with an impossible task : improve his FVC from 29% to 35% in six months.Has anyone tried this? Recommendations for equipment or technique? Any and all ideas will be appreciated.See More
May 27
David commented on PPMD's blog post Capricor Announces New Pre-Clinical Study Finds Repeat Doses of CAP-1002 Lead to Enhanced Exercise Capacity in Duchenne Muscular Dystrophy Disease Model
"Can't be more excited, cannot believe how lucky we are that this is happening in our backyard. We have the utmost faith and trust in Dr. McDonalds team. So appreciative of Capricor for their focus on the DMD men!"
Apr 30
David favorited PPMD's blog post Capricor Announces New Pre-Clinical Study Finds Repeat Doses of CAP-1002 Lead to Enhanced Exercise Capacity in Duchenne Muscular Dystrophy Disease Model
Apr 30
David favorited PPMD's blog post Capricor Announces New Pre-Clinical Study Finds Repeat Doses of CAP-1002 Lead to Enhanced Exercise Capacity in Duchenne Muscular Dystrophy Disease Model
Apr 30
David replied to Michele's discussion Adaptive Fishing Gear?
"We are lucky to know "a guy" locally who loves to get creative in his shop. He sells all terrain wheelchairs too. His name is Chris McIlwain and he is one great guy. If all else fails, maybe he can help. http://www.mcilwainmobility.com"
Mar 9
David replied to Michele's discussion Adaptive Fishing Gear?
Mar 8
David favorited PPMD's blog post Capricor Reports Significant Improvements in Duchenne Patients Treated with CAP-1002 Investigational Cell Therapy
Nov 17, 2017
David replied to Keith & Jill VE's discussion Emflaza (aka deflazacort) Approvals
"*6 weeks ago"
Sep 15, 2017
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, 2017
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, 2017
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, 2017
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, 2017
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, 2017
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, 2017
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

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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