Neil Brandom
  • Male
  • newport beach, ca
  • United States
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Neil Brandom's Discussions

Duchenne boys (or young adults) telling jokes

Started this discussion. Last reply by Neil Brandom Jul 22, 2008. 4 Replies

 

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Profile Information

About me:
Australian living in California
PPMD Board Member
949 375 0924
About my family:
Wife Catherine
20 yr old Dusty DMD
18 yr old Lucas
13 yr old Gabriella
Name(s) of child(ren)/individual(s) with Duchenne:
Dusty
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older
City:
newport beach
State:
ca

Comment Wall (14 comments)

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At 10:46pm on October 3, 2009, Deb Robins said…
Dusty looks hunky - must be an aussie! ;-) Your mum home or still stateside? Want to invite her personally to the launch in Sydney on Oct 24? Doug, Geoff & I are going down so would like to meet a few online pals at last...ALL the faithful will come in February though - they better, I got the fed govt grant again to help disadvantaged parents.
At 1:22pm on August 22, 2009, Susan Rathfelder said…
I have been meaning to call you about the pasta dinner Sept 5th @ downtown Disney, My hubby and I are interested in attending with our son. I will try and give you a call later.

Susan Rathfelder
At 8:46pm on July 29, 2008, Sharyn Thompson said…
Hi Neil,

I was just reading about the PTC124 trial and saw your son Dusty did the 28 day trial. My son isn't eligible for the trial as he is only 4 years old, but we hold out hope that it will work and he end up on PTC124. A quick question, did they notice any significant changes in your son during the 28 days? Is he on the extension study about to start?

Sharyn.
At 10:11pm on July 22, 2008, Lisa Groeger said…
I am assuming you just want the conference ones, right? I wish my camera was better but some of them are great..
At 5:32pm on July 22, 2008, Lisa Groeger said…
OK, so does that mean i can take the little tape that I believe is a mini DV out of my video camera and send it to you? It was great seeing you guys at the conference..this joke video is a great idea.
At 4:46pm on July 22, 2008, Susan Rathfelder said…
No he doesn't do either of those. We actually told him he could do a myspace or something if he wanted, he just wasn't interested. He mostly just plays his x-box (Lego StarWars, Lego Indiana Jones, Transformers, etc) and waits for the next Star Gate Atlantis episode to download on his itunes. Since he does Independent Study for school he is even more isolated. He is a great kid (at least I think so) with a great sense of humor he is just struggling right now.
At 2:16pm on July 22, 2008, Susan Rathfelder said…
That would be nice, I'm not sure how to pull if off though. Jon has really isolated himself and it is hard to get him to do anything. He is also going through some more serial casting beginning next week. It is hard to get him out of the house at all, he seems pretty content just hanging out playing x-box and watching movies. It is really frustrating.
At 12:03pm on July 22, 2008, Susan Rathfelder said…
Hi,

I saw your post about the video and wanted to say hi--Hi! We are pretty close to you. We live in Lakewood, right on the Lakewood, Long Beach border. Our son Jonathan is 17 and was diagnosed at age 9.
At 11:32pm on July 21, 2008, Kim Innabi said…
Hi Neil:

It was nice seeing you and Dusty in PA. Thanks again for the ride to the airport. I'll send a tape with the joke if you need it before Oct. when you and your family come visit us. Take care,

Kim
At 10:38pm on July 21, 2008, Kelli May said…
Hi Neil!
It was great seeing you and Dusty again this year. I will make sure to bug Elijah to let me tape him telling a joke. He's picky. It has to be just the right joke, you know?
kelli
 
 
 

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