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

Lung function equipment and training

Started May 27, 2018 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

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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