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Jay Griffin
  • Male
  • Concord, NC
  • United States
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Jay Griffin's Discussions

Athletics

Started Mar 14, 2016 0 Replies

My son is six and he is now playing baseball. What are your thoughts of our kids playing baseball? On one hand I want him to be active and play. The other concern is the physical part. I.e. swinging…Continue

VBP15 Dissociative Steroid Drug

Started this discussion. Last reply by Jay Griffin Jan 14, 2016. 4 Replies

Are there any families taking this? If so, please provide us your feedback

Variety of emotions

Started this discussion. Last reply by Andrea Cleary Dec 18, 2015. 1 Reply

My son was recently diagnosed with DMD.   Had a conversation with a genetic counselor.  Wanted to get more specific info regarding his test results.  I was hopeful a little bit because there was a…Continue

 

Jay Griffin's Page

Latest Activity

Jay Griffin replied to Michael Bazant's discussion Stem cells not a sollution?
"I think stem cell is promising but many yrs way from trials"
Oct 8, 2016
Jay Griffin replied to Nita McGauran's discussion Prednisone and weight gain
"So far so good. None of the side effects seen. He gained 2.5 lbs in two weeks. I just think it's growth sleet. Been on it since July 1."
Aug 27, 2016
Jay Griffin replied to Nita McGauran's discussion Prednisone and weight gain
"My son is on the VBP-15 clinical trial"
Aug 22, 2016
Jay Griffin replied to Jennifer Powers's discussion Deflazacort
"Try VBP-15 clinical trial"
Aug 22, 2016
Jay Griffin replied to Nida Zuberi's discussion What supplements/ vitamins combination works
"Hello, I know this is overwhelming. I am going to send you an I.M so look for it. My son is 6 Will be 7 in July. We give him his multivitamin, vitiman D... If you are on Facebook. I will look for you now. Most of us are there and you can get a bunch…"
May 24, 2016
Jay Griffin replied to Galia Ben Ishay's discussion Any news regarding the Tamoxifen trial???
"I've never heard of it"
May 8, 2016
Jay Griffin replied to Jason Darienzo's discussion Sarepta Can Win Speedy FDA Drug Approval?
"Mine too"
Apr 29, 2016
Jay Griffin favorited Kevin Freel's discussion NICE Recommends Translarna
Apr 15, 2016
Jay Griffin replied to Kevin Freel's discussion NICE Recommends Translarna
"If I am not mistaken, it's exon 51... This could not be shipped to the US.. My son deletions 51-55 (not eligible even it was approved in the US. I am very happy for them. This approval gives great momentum for the DMD community around the world"
Apr 15, 2016
Jay Griffin replied to Bernardo A. Iriberri's discussion The FDA and Ataluren (Translarna)
"Thx"
Apr 12, 2016
Jay Griffin replied to Archana Maringanti's discussion Study of DS-5141b in Patients With Duchenne Muscular Dystrophy in the group Early Years (diagnois-age 6)
"No.. Let me look that study up"
Apr 6, 2016
Jay Griffin replied to Bernardo A. Iriberri's discussion The FDA and Ataluren (Translarna)
"Andrea, where is the video"
Apr 5, 2016
Jay Griffin commented on Kari's group Dad's Only
"I hope all you dad's are doing well.."
Apr 3, 2016
Jay Griffin joined PPMD's group
Mar 29, 2016
Jay Griffin commented on PPMD's blog post ReveraGen BioPharma Receives $3M for Phase 2 Studies of Vamorolone in Duchenne
"This is good"
Mar 28, 2016
Jay Griffin is attending PPMD's event
Thumbnail

Webinar: BMS Anti-Myostatin Adnectin Program at Online Webinar - Eastern Time Zone

March 30, 2016 from 1pm to 2pm
Wednesday, March 30th at 1pm easternPlease join PPMD and Bristol-Myers Squibb (BMS) as we host a webinar Wednesday, March 30th at 1pm ET to discuss the BMS Anti-Myostatin Adnectin Program, recent preliminary data from the first-in-human study of the BMS anti-myostatin, and a clinical trial that BMS is conducting to test this drug in boys with Duchenne muscular dystrophy.Speakers:Pat Furlong, Parent Project Muscular DystrophyLeslie Jacobsen, MD, Bristol-Myers SquibbLeslie Jacobsen is the Medical…See More
Mar 27, 2016

Profile Information

About me:
Live in Concord, NC
About my family:
Wife of 16 yrs and we have two boys ages 6 and 4
Name(s) of child(ren)/individual(s) with Duchenne:
Franklin
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
concord
State:
North Carolina

Comment Wall (3 comments)

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At 7:49pm on January 17, 2016, Shawn said…

Jay sorry we didn't connect last week. If you're still interested in giving Shawn or I a call just let us know.

Andrea

At 10:39am on January 12, 2016, Shawn said…

Jay yes I'll be around 'til 3:30ish our time...just so happens my son and husband are at Cincinnati Children's Hospital this week. Today (Tuesday) is the very best day for us to talk as I'll be doing a lot of conference calls between the hospital/myself/my husband the rest of the week. My phone number is five two zero, 5 1 four, 7 nine 6 five. 

At 9:22pm on December 16, 2015, Kara said…
Hi, Jay

I saw some of your posts, and I so understand where you are. This is a strange journey we are all on. Your emotions change from moment to moment. There is so much to take in.

We are very happy with the care we have gotten at Duke. Dr Smith (neuro) is great, as is the rest of the doctors and nurses we have seen. I'll send you a friend add on here and then we can message back and forth that way.

Also, here is a link to my Facebook blog page. I don't update it as much as I thought I would, but I try to spit every few months. https://www.facebook.com/BlogThisIsLife/
 
 
 

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