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  • Penny Hauer
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Brian Denger's Discussions

Educational Drug Development Webcast Opportunity

Started this discussion. Last reply by Brian Denger Jun 19, 2010. 2 Replies

New Discussion Tab

Started this discussion. Last reply by Keith Van Houten Mar 25, 2010. 7 Replies

 

Brian Denger's Page

Latest Activity


Staff
Brian Denger replied to Janine's discussion Basic Genetics for DMD
"Hello Janine,I have a well worn copy of the guide.  The most extensive genetics information geared for laypeople I am familiar with is available from the NIH: http://www.ghr.nlm.nih.gov/BrowseGenes  In addition to fact sheets, there…"
1 hour ago

Staff
Brian Denger replied to Christena's discussion Insurance vs. state issued medical card
"Which insurance is the primary may be dependent on the State Insurance Program rules.  If there is an option, Keith's advice is spot on.  It will depend on which plan provides the better coverage.  The programs in which I am most…"
Apr 5

Staff
Brian Denger posted a blog post

We Must Understand Heart Health in Duchenne

I have had the great pleasure of representing Parent Project Muscular Dystrophy and the Duchenne community at the Muscular Dystrophy Coordinating Committee (MDCC).   Members of the MDCC are involved in muscular dystrophy research, including federal agencies and advocacy organizations.   Last August, I spoke at a MDCC meeting. The meeting was seven months after my son Matthew died from a cardiac arrhythmia.   His passing made me realize the management of cardiac health is complex and needs to be…See More
Mar 11

Staff
Brian Denger favorited Pat Furlong's blog post Finally, Some Good News!
Feb 7

Staff
Brian Denger replied to wainaina muiruri's discussion Heel Cord Release
"Hello Wainaina. My son Matthew had tendon releases in both ankles when he was 11 for similar reasons.  His feet were being pulled down and inward (equinus deformity) despite his wearing AFOs.  It was apparent he wouldn't be able to…"
Dec 25, 2013

Staff
Brian Denger favorited PPMD's blog post Together We Can Make a Difference
Dec 9, 2013

Staff
Brian Denger replied to Sharon Wood's discussion PT and OT
"Hello Sharon,I'm glad to read of your interest in this subject and concern for your nephew.  PT and OT can be useful in maintaining function and range of motion as well as help alleviate pain caused by joint contractures.  Improved…"
Nov 13, 2013

Staff
Brian Denger replied to Michele LAU's discussion how do you deal with everyday life moving your kid from a place to another ?
"Hello Michele,I'm sorry to read that your son lost the ability to walk.  As I'm sure you know, resources and support varies based on where you live.  What many families do is rely on friends and extended family to help them with…"
Nov 6, 2013

Profile Information

About me:
I am the father of two sons who have DMD. I am very involved with PPMD in the effort to education and help families living with DMD.
About my family:
My wife is Alice and we have a daughter, Rachel, and two sons, Matthew and Patrick. We live in Maine
Name(s) of child(ren)/individual(s) with Duchenne:
Matthew and Patrick
Age(s) of child(ren)/individual(s) with Duchenne:
13-18
City:
Biddeford

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Brian Denger's Blog

We Must Understand Heart Health in Duchenne

Posted on March 11, 2014 at 6:00pm 0 Comments

I have had the great pleasure of representing Parent Project Muscular Dystrophy and the Duchenne community at the Muscular Dystrophy Coordinating Committee (MDCC).   Members of the MDCC are involved in muscular dystrophy research, including federal agencies and advocacy organizations.   Last August, I spoke at a MDCC meeting. The meeting was seven months after my son Matthew died from a cardiac arrhythmia.   His passing made me realize the management of cardiac health is complex and needs to…

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Your input needed on the next Action Plan for the Muscular Dystrophies

Posted on November 1, 2013 at 3:48pm 0 Comments

I take great pride in serving as a member of the Muscular Dystrophy Coordinating Committee (MDCC). Legislated by the passage of the MD-CARE Act in 2001 (reauthorized in 2008), the MDCC was tasked with developing an Action Plan for the Muscular Dystrophies.  John Porter, PhD, National Institutes of Health (NINDS),  is leading and organizing the effort to update the current Muscular Dystrophy…

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MDCC meeting report

Posted on October 30, 2013 at 11:50am 0 Comments

The Muscular Dystrophy Coordinating Committee (MDCC) had its 10th meeting the end of this summer at the National Institutes of Health offices in Bethesda, MD.  The members of the MDCC come from federal agencies involved in one or more muscular dystrophy programs as well as public representatives from several organizations representing one or more forms of muscular dystrophy.  There are representatives from the National Institutes of Health (NINDS, NIAMS, NICHD and NHLBI), Centers…

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2013 MDCC Meeting

Posted on September 4, 2013 at 3:00pm 0 Comments

The Muscular Dystrophy Coordinating Committee (MDCC) had its 10th meeting on August 26, 2013 at the National Institutes of Health offices in Bethesda, MD.  The members of the MDCC come from federal agencies involved in one or more muscular dystrophy programs as well as public representatives from several organizations representing one or more forms of muscular dystrophy.  There are representatives from…

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Remembrance

Posted on March 22, 2013 at 8:36pm 1 Comment

I’m at the point where I can understand Stockholm Syndrome which is where a hostage or captive develops a bond with their captor. For many years I’ve been held in the grips by Duchenne muscular dystrophy and I’m not implying that I have any fondness for the disorder, the opposite is more accurate. More simply said, it is when you become accustomed to doing things a certain way or are adjusted to a particular ‘normal’ any change in your life or routine is…

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Comment Wall (29 comments)

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At 2:43pm on November 8, 2012, Sif Hauksdóttir said…

I came across your blog. If i may ask how old are your sons? I have 2 sons with DMD, aged 2 and 3, they are very different and i am sure that they will be affected differently, are your sons very diffrent ?

At 12:49pm on November 11, 2011, Ofelia Marin said…

Hi Brian, I do not doubt the fact that bone development and growth are related to DMD. There are several studies one looking at more than 100 boys showing that they are shorter than their siblings. However, they are not as short as the boys on steroids. We all know that stunted growth and osteoporosis are side effects of the steroids, no one doubts that. The point I wanted to make is that having a boy as short as the boys today, after years and years of steroids, can easily make them obese. On contrary, if my son is 5'6" due to DMD and not 4'6" due to "DMD+steroids" (I am 5'8" and my husband is 6'5") he can easily have a normal weight for height. Obesity causes many other problems not even mentioning the cardiovascular ones. Steroids are the gold standard of care because we do NOT have anything else to compete with them. Every doctor I talked to agrees with the fact that they have serious side effects and that we need to find a replacement therapy minimizing these side effects if possible. I am sorry that I cannot accept the status quo and blame Duchenne for every single thing that makes my son different. Some things are related and some things are not. I am not going to ignore the serious side effects and just say that it's Duchenne. The fact that we do not have a better alternative does not mean that we should just say, it's fine, he would have been shorter anyway due to DMD. He would have been shorter but NOT as short, not overweight, insuline resistant, puberty delayed or having bone density of a 80 yo woman at age 10. I also do not accept the fact that we are told that height does not matter, as they lose ambulation anyway. I guess I still hope that the future will be different and at some point during the next few years we will not be told that it doesn't matter and we will have better alternatives. And don't even get me started about the fact that many parents tell us from the start that our boys will have cognitive problems. I lost the first years of my son't life searching for these problems, thinking that he should have some. My son doesn't have ANY of them. Neither do many of my friends sons. I think that it is time to look at each of our boys individually and not try to put them in the same bucket only because they have Duchenne. The fact that they have a certain mutation in the same gene doesn't mean that they will be similar in all aspects. I think that it is time to tell parents of young boys that they can excel academically, have friends, develop just like any other non DMD boy. My son and many of my friends sons are real proof of that. Ofelia 

At 10:51am on November 11, 2011, Jeferson Marques Machado said…

Hello, my name is Jefferson and DMD have, as I do to be able to talk to you? Excuse my way of speaking but I need to talk to someone who can help me. I am new to this networking site and do not know how to use it perfectly.

At 12:46pm on November 10, 2011, Ofelia Marin said…

Brian, All studies I looked at suggest "shorter" stature (some suggest 6 cm shorter than non DMD siblings, others -1 SD etc.) but not to the level where the boys fall off the charts. Almost all DMD boys today fall off charts after a certain age. The studies also note that GH deficiency is not Duchenne related, neither is delayed puberty or insulin resistance. I am sorry to say that I still do not believe most of the things mentioned are due to Duchenne itself (the data does not show that) and we certainly do know that they are steroid side effects. I think scientists should focus on approving a replacement to steroid treatment (Eric Hoffman's company is "working" on one for a while now) so our boys can have average height and normal weight. There is a big difference when you have 140lbs on a 4'6" frame vs. a 5'6" frame. Obese vs. normal weight for height.

At 10:45am on July 1, 2011, Bill Reynolds said…

Hi Brian,

I hope you and your family are well. I lost yours and a bunch of other email addresses when converting from one system to another, so I wanted to leave a quick note to see if we can catch up briefly before the Connect Conference. The interview study has come a long way since the last conference, and if you have a few minutes I can send you some notes on ideas I'd like to emphasize in the talk I'm giving this year. You can email me at william.reynolds@stockton.edu.

 

Look forward to catching up. Thanks.

 

Bill

At 12:43pm on April 18, 2011, Paul Johnson said…
I hope you had a good run today.
At 6:10am on February 19, 2011,
Staff
Brian Denger
said…
Hi Penny,

Without seeing Caleb most doctors will not comment even hypothetically. If possible make an appointment with Ron Victor at Cedar Sinai in LA. Some doctors have more experience in DMD. It is sad your current doctor's staff are being strict "gate keepers. Caleb may need monitoring
to learn/know what is going on.

Best of luck,

Brian
At 2:55pm on February 16, 2011, Penny Hauer said…
Brian  I need alittle help here. Ca just does have a good community for duchennes yes they have Drs who are great in their  field however not thejourney our boys are taking Caleb age 10 is having troubles with heart beats he comes to me feel my heart what happens is it jumps from 55 to 120 and goes back and e something different why would I you are not up on the duchforth his lips are colorless it lasts 5 to 15 mins ok on with heart montor called in ou say that this boy is scared  ok dr said we can do the test again well unless you havtwo events but the tec. said do not call the dr as this does not fall in the numbers the dr wants so I call the dr who says tell me not to worry its nothing so I ask why would I you said not to worry in Fla a family said they start on mrds at age 10.the cardo Dr is at childrens in san diego what do I do where do I go help me please  Penny
At 1:19pm on July 10, 2010, Janine said…
We are leaving Monday for our trip. I learned that there was a lay over in Atlanta both ways so I was even more concerned about the chair. I ended up contacting the MDA here and they in turn contacted MDA in NYC. They found us a loaner power chair that they made arrangements to drop off at our hotel and then pick up after we leave. My son would rather have his own chair as it has elevated and recline but for a week he'll make due and it gives us peace of mind.
At 11:22pm on May 5, 2010, Janine said…
Brian,

In a post some time back you mentioned that you don't take your son's power chairs when travelling. I wondered why? We are going on a trip to NYC this summer and he just got his first powerchair in March and wanted to take it on his trip. I started to worry about how it would be treated by the airline personel? I assume they take it and store it with the luggage. Being that they are so pricey I would hate for it to get damaged.

Any feedback would be appreciated.

Thanks,
Janine
 
 
 

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