"Hey Moein,
I think there are reasons to be hopeful. There are a number of treatments in trial, and more in development. More to your point, though, there are a lot of already-approved FDA compounds being run through zebra-fish and myomics - those…"
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Steve Dreher
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Steve Dreher's Discussions
Aminophylline Study at Children's Hospital In Boston
Started this discussion. Last reply by Ginny Ward Mar 18, 2011. 3 Replies 0 Favorites
This is all over the internet today, but I haven't located the actual study - anyone have an idea where it is? …Continue
More from Dr. Rhodes
Started this discussion. Last reply by pop jarvis Mar 3, 2011. 1 Reply 0 Favorites
Hi Everyone, I know Dr. Rhodes has been discussed before - this is an e-mail he sent out recently - South Texas Innovative MedicineDonald A. Rhodes, D.P.M., F.A.C.F.A.S.Diplomate American Board…Continue
Dr. Fallon - Biglycan - DMX Mouse
Started this discussion. Last reply by Ofelia Marin Dec 29, 2010. 5 Replies 0 Favorites
Dr. Fallon's work is all over the web today:…Continue
Cure Duchenne's Research Index
Started this discussion. Last reply by Archana Aug 28, 2010. 1 Reply 0 Favorites
Many of you may know of this, but it's worth checking out if you haven't seen it. Lot's of great stuff in the pipeline: …Continue
Steve Dreher's Page
Latest Activity
Steve Dreher replied to Ofelia Marin's discussion Duchenne muscular dystrophy: Drug development and regulatory considerations - From the FDA
Donna commented on Steve Dreher's blog post Gus Turned 6 - The Balancing Act (plus a song!)"This is absolutely beautiful. Thank you for sharing it with us."
Steve Dreher posted a blog postGus Turned 6 - The Balancing Act (plus a song!)
It was a mere 5 months ago that I promised to write again soon - seems like only yesterday. But, Duchenne Muscular Dystrophy is a balancing act, and we ended up on one side of the see-saw. We spent the last few months taking care of Gus - we bought a new house - one that's better for him (not perfect,but better). There are far fewer stairs and a flat lot. While it seems like yesterday when I promised to write, the actual yesterday was Gus' birthday. He turned 6 and I had to write in honor of…See More
Steve Dreher replied to Leeandra Arhdeacon's discussion clinical trial"It's interesting you bring that up - I have another concern about dystrophin as well. We know about the potential for immune response (http://www.nature.com/gt/journal/v7/n17/full/3301259a.html) - and yet I don't hear very much talk…"
Steve Dreher replied to Leeandra Arhdeacon's discussion clinical trial"Hi Cheryl and Ofelia,
Back to Leeandra's original question - will Exon skipping help her boy - or mine? We all know that skipping Exon 51 or 44 will only help a relatively small percentage of boys, so how can we come together…"
Steve Dreher replied to Leeandra Arhdeacon's discussion clinical trial"Hi Sharon,
I've wondered about the feasibility of these treatments becoming available in the near term - at times the approval process seems so daunting. There is a table at the Leiden Muscular Dystrophy Pages:…"
Ginny Ward replied to Steve Dreher's discussion Aminophylline Study at Children's Hospital In Boston"This is the citation. It is an open access article.
http://www.pnas.org/content/early/2011/03/08/1102116108.full.pdf+html?sid=dfa3c13f-e539-40f5-a2b6-6eac92d1eafb
Ginny"
Steve Dreher replied to Steve Dreher's discussion Aminophylline Study at Children's Hospital In Boston"Found it - right here: http://www.pnas.org/content/early/2011/03/08/1102116108.full.pdf"
Steve Dreher replied to Leeandra Arhdeacon's discussion clinical trial"Hi,
Currently, I believe there are three trials operating - none of them for 22-41 I'm sorry to say. The trials that are going are:
GSK2402968/PRO051 – Phase II – Exon 51 skipping
PRO044 – Phase…"
Ginny Ward replied to Steve Dreher's discussion Aminophylline Study at Children's Hospital In Boston"Zebrafish study highlights existing drugs that may help restore muscle in DMD
BOSTON, March 18, 2011 /PRNewswire-USNewswire/ -- Armed with a zebrafish model of Duchenne muscular dystrophy (DMD) and a library of 1,200 chemicals already approved for…"
Steve Dreher posted a discussionAminophylline Study at Children's Hospital In Boston
This is all over the internet today, but I haven't located the actual study - anyone have an idea where it is? http://news.yahoo.com/s/usnw/20110318/pl_usnw/DC67781See More
Steve Dreher replied to Rob and Theresa Capolongo's discussion My sons deletion"Hi - You should also note the positive news that came from Summit corporation recently (SMT C-1100 - http://www.drugs.com/clinical_trials/summit-reports-progress-duchenne-muscular-dystrophy-programme-international-conference-4120.html), it's…"
pop jarvis replied to Steve Dreher's discussion More from Dr. Rhodes"For discussion on STS treatment--- check out the facebook site South Tesas Innovative Medicine Discussion Forum!--unbiased, discussion, analysis and patient stories..."
StaffPPMD replied to Steve Dreher's discussion South Texas Innovative Medicine
"UPDATE FROM PPMD
PPMD recently received a formal request from attorneys representing Donald A. Rhodes, D.P.M., F.A.C.F.A.S. to remove a discussion on our community site about VECTTOR (STS) treatments.
The community site was…"
Profile Information
- Age(s) of child(ren)/individual(s) with Duchenne:
- 4-6
- City and State:
- NH
Steve Dreher's Blog
Gus Turned 6 - The Balancing Act (plus a song!)
Posted on May 11, 2011 at 9:00pm 1 Comment 1 Favorite
It was a mere 5 months ago that I promised to write again soon - seems like only yesterday. But, Duchenne Muscular Dystrophy is a balancing act, and we ended up on one side of the see-saw. We spent the last few months taking care of Gus - we bought a new house - one that's better for him (not perfect,but better). There are far fewer stairs and a flat lot. While it seems like yesterday when I promised to write, the actual yesterday was Gus' birthday. He turned 6 and I had to write in…
Continue Hope for Gus Blog
Posted on December 30, 2010 at 7:37am 0 Comments 0 Favorites
Hello PPMD Community,
I moved a number of blog posts to PPMD from a blog I have maintained at Word Press and Blogspot for the past year. It looks as if I wrote them all today, but they reflect the past year, which was the first year since Gus' diagnosis.
I wanted to share my thoughts with this community because you are the people who truly understand the roller-coaster emotional life of having a child with DMD.
I wish you all a wonderful New…
Continue DMD and the Economics of Our Sons' Lives
Posted on December 30, 2010 at 7:29am 2 Comments 0 Favorites
It's been almost a year since Gus was diagnosed with DMD. On the drive into work this morning, I was thinking about what I've learned about DMD since that November…
Cousin Jake
Posted on December 30, 2010 at 7:28am 3 Comments 0 Favorites
I wanted to share a poem written by Jake, Gus' oldest cousin. Jake is in 8th grade, and he has shown us his maturity, compassion and love for his cousin by…
Comment Wall (2 comments)
- At 9:26am on July 6, 2010,
RAKTIM SINGH said… - Hi Steve,
Were you able to attend last week's PPMD conf? Are there any further news on ACE-031?
Personally I am quite excited about ACE-031. Not sure why full community is not looking forward towards this.
Any cheerful news here.
Raktim
- At 7:33pm on November 28, 2009,
StaffPat Furlong said… - Steve,
Welcome to the DMD community does not seem appropriate somehow. I realize you are not here by choice. Most importantly we are all here together to work, to make life different. Please let me know how to help.
Pat
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Events
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Paint for Peyton to end Duchenne
June 8, 2012 from 6:30pm to 7:30pm – Spirited Art
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