"Just a quick follow up that anyone on corticosteroids (Prednisone and Deflazacort) are generally considered immunosuppressed (have a weakened immune system).
The nasal spray vaccines are a LAIV (essentially a live form of the influenza virus…"
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Andrew Kerr
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Andrew Kerr's Discussions
Pfizer Extends Age Eligibility for Myostatin Inhibitor Trial
Started Oct 9, 2016 0 Replies 0 Favorites
I haven't seen this on PPMD yet so I thought I'd share.Pfizer has extended the age range for their Myostatin Inhibitor trial. Originally it was, if I remember correctly, 6<10 years of age. They…Continue
Interesting Research - May explain why so far, exon-skipping isn't seeing the results we'd hoped for.
Started this discussion. Last reply by Jay Griffin Feb 15, 2016. 2 Replies 1 Favorite
Researchers found another function that dystrophin provides in muscle cells. The mini-dystrophin doesn't seem to provide that function.…Continue
Gene Editing?
Started Dec 4, 2015 0 Replies 0 Favorites
Saw this link on CBC (Canadian news site):http://www.cbc.ca/news/health/crispr-summit-1.3349192The tool was adapted from one…Continue
Ready for Kindergarden?
Started this discussion. Last reply by Andrew Kerr Jun 22, 2010. 4 Replies 0 Favorites
Our son Hayden is just finishing up his first year of school. The teachers and aids, whom we really like, have suggested we may want to consider keeping him in pre-K for one more year because of…Continue
Andrew Kerr's Page
Latest Activity
Andrew Kerr replied to Lisa Tepper's discussion Deflazacort dosing schedule"Sam...
We have two boys with DMD, both started on deflazacort at about age 3. Our oldest is about to turn 11 and our younger 8. They take it daily and have for years. We do believe, along with physical therapy, that it has had a…"
Andrew Kerr replied to Terry Ann Attaway's discussion Beckers Type MD"I'm certainly not an expert, but exon skipping wouldn't be expected to help someone with Becker's. Drug's like Eteplirsen should help make Duchenne more like Becker's."
Andrew Kerr posted a discussionPfizer Extends Age Eligibility for Myostatin Inhibitor Trial
I haven't seen this on PPMD yet so I thought I'd share.Pfizer has extended the age range for their Myostatin Inhibitor trial. Originally it was, if I remember correctly, 6<10 years of age. They have extended that to 6<16. As far as I can tell, the other criteria has remained the same.This is good news for our family. Our oldest was tested, about a week before his tenth birthday, and was found to be about 0.2 seconds (yes, less than a second) too fast on the stair climb to be enrolled.…See More
Andrew Kerr replied to Mike O's discussion Etiplersen will cost $300,000"I think it was relatively well known that almost nobody was going to be able to afford this drug out of their own pocket. It will be insurance companies (or government in some countries) that will be paying the bill."
Andrew Kerr replied to Jennifer Powers's discussion Deflazacort"Depends on what you're looking for.
The equivalent amount would probably be about 6mg taken on the same schedule.
The standards of care says that they should be on .9mg/kg/day of Deflazacort, which is roughly what our kids are…"
Andrew Kerr replied to Archana Maringanti's discussion Which exons are to be skipped for deletions in exons 46-47 ? in the group Early Years (diagnois-age 6)"Sarepta has a good tool to help figure this out:
http://www.skipahead.com/exon-mapping-tool
In your case, 45 is the exon you son would want skipped."
Jay Griffin replied to Andrew Kerr's discussion Interesting Research - May explain why so far, exon-skipping isn't seeing the results we'd hoped for."Stem cell therapy is promising but will take 10 years to come thru the pipeline. At lesst that is what I've read from one doctor"
Brid Murray favorited Andrew Kerr's discussion Interesting Research - May explain why so far, exon-skipping isn't seeing the results we'd hoped for.Jay Griffin replied to Andrew Kerr's discussion Interesting Research - May explain why so far, exon-skipping isn't seeing the results we'd hoped for."Good read....Thanks for sharing"
Andrew Kerr posted a discussionInteresting Research - May explain why so far, exon-skipping isn't seeing the results we'd hoped for.
Researchers found another function that dystrophin provides in muscle cells. The mini-dystrophin doesn't seem to provide that function.http://www.news-medical.net/news/20160205/Duchenne-muscular-dystrophy-direct-effect-on-muscle-stem-cells-An-interview-with-Dr-Rudnicki.aspxSee More
Andrew Kerr commented on Andrew Kerr's blog post Myostatin Inhibitor Trials"Yup.
There was some discussion they may let him in as they have a very high rate of kids being excluded, but that was about three months ago and we haven't heard anything since."
Andrew Kerr commented on Andrew Kerr's blog post Myostatin Inhibitor Trials"Unfortunately Hayden was excluded from the trial. He was 0.2 (yes, less than a second) too fast on the stair climb."
Jay Griffin commented on Andrew Kerr's blog post Myostatin Inhibitor Trials"Andrew, how is the trial going?"
Profile Information
- About me:
- Father of two boys with DMD and uncle to two more.
I am an IT Security Consultant, recently moved to British Columbia with the hope of getting better access to trials for the boys.
- About my family:
- Happily married to my wife Mandy, and raising our two boys Hayden (9 years old) and Cameron (6 years old).
- Name(s) of child(ren)/individual(s) with Duchenne:
- Hayden and Cameron
- Age(s) of child(ren)/individual(s) with Duchenne:
- 7-12, 13-18
- City:
- West Kelowna
- State:
- British Columbia
Andrew Kerr's Blog
Myostatin Inhibitor Trials
Posted on October 9, 2015 at 5:54pm 6 Comments 1 Favorite
Looks like we are just going to get into the Pfizer Myostatin Inhibitor trials with Hayden. He turns 10 in just over a month and we're going for screening next week to Vancouver. We were really starting to wonder if he was going to get in, but the folks at Vancouver pushed and unfortunately had to bump another boy that was scheduled to be the first at that location. The other boy will still get in on the trial, but Hayden would have been excluded the day he turned 10 so they had to move…
Continue We've been asked to join a trial.
Posted on August 15, 2015 at 2:09pm 2 Comments 1 Favorite
So this week, one of our biggest hopes came true. About a year ago, I left my job to take a consulting position and we moved to British Columbia. We weren't particularly happy with the services we were receiving in Saskatchewan and decided if we could, we'd move to be closer to one of the Children's hospitals in Canada. We didn't want to move East to be near Toronto, so BC was the only other choice. There certainly were some stressful times during the move and since, and it wasn't easy…
Continue Reddit Users, Vote for PPMD
Posted on February 18, 2015 at 4:26pm 0 Comments 0 Favorites
So I'm sure there are at least a few folks from PPMD that also visit Reddit.
Reddit is donating about $850,000 evenly split among 10 charities. PPMD is on the list but isn't getting much attention. If you are a user, you can go here:
http://www.reddit.com/donate?organization=311405490
And click the 'Vote For This Charity' button. It wouldn't hurt to vote up the submission which…
Continue Happy Father's Day
Posted on June 19, 2011 at 2:38pm 0 Comments 2 Favorites
Hayden (our oldest) is in Kindergarten and I wasn't too surprised when we gave me a card this morning they made in class. What did surprise me was the poem included in it, and how I couldn't hold back a few tears after reading it. It hit a little too close to home and made me thing about how important it is to slow down once in a while and enjoy the time we have.
Continue"Walk a little slower Daddy,"
said a child so small,
"I'm following in your footsteps…
Comment Wall (3 comments)
- At 2:18pm on March 1, 2011,
Allyson said… - Andrew, I saw your reponse to Sharon's blog today and your story about choosing trees for your yard and the person's comment that they would be great to climb on just hit home for me. I've got an almost 7-year-old son diagnosed a little over 2 years ago. We went shopping for a new car this past weekend and it hit me that in the past we would have just bought what we liked. But now that whole process is tainted by the "can he get in it easily?" question. Anyways, I just found it a little saddening at the time, and your tree story brought it all back how life has been changed, even in little incremental ways. But we are going with the same approach as you are, to concentrate on the things we can control, not to place an undue amount of worry/focus on the things we cannot, and have as much fun as we can in the meantime.
- At 9:24pm on August 3, 2010,
Joshua's mom said… - It was still baseball size 2 hours later!!! It bounced 5 feet in the air and totalled a lot of cars. You were probably quite grateful not to be home. Did you get any damage from it?
- At 1:49am on July 13, 2010, Joshua's mom said…
- Hi Andrew,
On August long we will be going to Kenosee and Carlyle for the weekend. We are actually having KFC from Weyburn delivering Saturday night's supper since the one in White Bear burnt down last week! I know it is approx. an hour away but if you would like to meet that would be great! Our phone number is 204-375-6678.
Take care,
Naomi
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