Brian Denger
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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

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:

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Brian Denger's Blog

Riding to raise awareness

Posted on August 1, 2016 at 6:31pm 0 Comments

On July 30th, I joined the Ride4Gabe Team for the second leg of their eleven-day trek which started in Houlton, Maine and ends in Mobile, Alabama.  Representing Parent Project Muscular Dystrophy (PPMD) and as the father of two sons who have Duchenne muscular dystrophy, I rode 150-miles of the day’s 213-mile route.   By every measure, it was a great…


Social Security Disability Help

Posted on September 15, 2014 at 11:30am 0 Comments

If you have a child with Duchenne or Becker muscular dystrophy, you may be eligible to receive funds from the government to help with the burden of expenses brought on by day to day life with muscular dystrophy. Social Security Disability benefits, in the form of Supplemental Security Income (SSI), can help ease the financial stresses of raising…


Certain Medicaid Waiver Payments May Be Excludable From Income

Posted on May 13, 2014 at 11:00am 0 Comments

The Internal Revenue Service (IRS) recently reversed a policy and now allows parents of people with disabilities who receive Medicaid Home and Community Based waiver funds, for care giving services provided to their children, to exclude those funds from their incomes. Notice 2014-7 describes changes in the IRS policy. These changes may apply to foster and biological parents caring for a person with Duchenne muscular…


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…


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…


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


Look forward to catching up. Thanks.



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, 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,

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…

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.


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