Julie Garcia's Comments

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At 10:16am on December 25, 2008, Sharyn Thompson said…
Hi Julie,

I just read one of your posts about your son being denied PTC124. Just out of curiosity, did they give a reason? My understanding was they were desperate to get enough boys on the trial, so this comes as a surprise.

My son has a nonsense mutation, but is not yet 5 years old (not till may 2009) so he doesn't qualify!

Merry christmas!
Sharyn Thompson.
At 11:01pm on December 16, 2008, Beth Kilgore said…
Hi, Julie,

Sorry to take so long to respond. It's a busy time for everyone. Hope you and your family are well. We are doing fine and looking forward to the holidays. Thanks for giving me Leslie Guzman's name. I will leave her a comment. I just made an appt. with Dr. Wong for May 19 as that's the earliest we could get in. I am excited to learn more about growth factor hormone for Andrew. Hope it is helpful for Nick.

Happy Holidays,
At 10:05am on December 16, 2008, Nabeel Ahmed said…
HI,Julie Garcia Thanks for asking me for my needs.Actually in Pakistan I have seen this type of patient but not progress like USA.
nabeel feels difiduilty for standing, when he walk he take out his stumuck,and need help, some time he use walker
At 9:18am on December 15, 2008, Nabeel Ahmed said…
Hi Julie Garcia, My name is Mehboob Ahmed from karachi Pakistan,my son Nabeel got same situation as Nick, dignosed at the age 10 he will be sixteen in march 2009,
what kind of medicine you use for nick, is there any apratus for climbing stairs for nick,
At 3:02pm on December 12, 2008, Bill Barnes said…
Thanks Julie for the welcome, I would like to do that. My son Reid is a patient at Loma Linda. He sees Dr. Bunell on Jan. 13. I will pas on anthing that would we useful. Thanks again.!
At 1:29pm on December 10, 2008, Christina said…
He sure did. Joseph had his yearly cardiology appt w/Dr. Parrish. Did Nick also have an appointment?
At 1:06am on December 4, 2008, carrie said…
Thanks julie. Eilleen Fowler, one of the recipients of the chair is fantastic and is also interested in DMD. She has been working with us to mover things forward and is a great asset. Bill oppenhiem and Ed Mcabe have also been helpful to us and are becoming increasingly DMD interested.
At 9:47pm on December 3, 2008, Tammy said…
Hi Julie, I just wanted to share some pictures of Helen, her heart is beating strong in Josh. Isn't she just beautiful. talk to you soon
At 10:29pm on November 30, 2008, Joanne Keeley said…
Hey Julie,
Had to welcome Dr. Finder!! The kids are begging to get to bed.
Talk to you tomorrow buddy......
Love, Joanne
At 5:55pm on November 23, 2008, Christina said…
Hi Julie,

It's also been very hectic on my end, as well (and probably will continue to be this next week). The party went well and Joseph loved it.

I hope you have a great Thanksgiving!

At 2:50pm on November 23, 2008, carrie said…
Hi Julie,
Thank you for your kind words. I have been following your advocacy activities over the years and are very grateful for your efforts. We would love to meet you, no immediate plans to come to sacramento though. Let us know if you are in LA. As you may have heard, we have been working on efforts to increase DMD research and care in california. We'll keep you posted as things progress. We have a few buns in the oven now, which if successful could benefit by partnering with DC advocacy efforts. Best, Carrie
At 12:08am on November 23, 2008, Tammy said…
Hey Julie, its me! Now I just need to figure this all out, I am just so glad to see pictures of all of our beautiful children! Type ya soon
At 6:30pm on November 17, 2008, Debra Chiabai said…
Hi Julie,
My doctor is in Canada. Not sure who is looking at vibration therapy in the states but I did talk to Sue Apkon in Denver. She's the one who first told me about vibration therapy so she might be a good person to start with for US doctors.

At 7:56pm on September 21, 2008, Kim Innabi said…
Hey Julie! I go to the "Add Photos" icon underneath where my picture slideshow is playing and click on that...there is a green plus sign). It takes you to a menu that has a lot of boxes with "browse" next to them. Click on the first "browse" and it will let you find your picture folder on your computer, then just click on the pic you want to add. Keep doing that for each pic, then click on the "done" (I can't remember exact word). I can't tell if you have added your pictures to your "community box", or your "photo box". If you put them in the photo box, then you will have options to give them titles and also to have them displayed as a slideshow, etc. I have mine as a slideshow. When I first did it, I put them in the community box, but that seemed harder. Let me know if it doesn't work. I just added two of Nicholas in Cincinnati. Good luck!
At 10:58pm on September 3, 2008, Brent Van Eperen said…

We are doing ok. Jennifer and I helped with our local MDA telethon on Labor day, and I was asked to talk next year on the air for the MDA. Thanks for the email.

Brent and Jennifer

At 8:52pm on July 26, 2008, David Feder said…
Hi Julie: you can see some photos of my vacation in July:

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