On July 30^th, 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…

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…

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…

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…

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…

The Muscular Dystrophy Coordinating Committee (MDCC) had its 10^th 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…

The Muscular Dystrophy Coordinating Committee (MDCC) had its 10^th 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…

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…

This is the week I am supposed to rest, relax and store up a bit of glycogen. That formula is in every runner’s training plan along with the advice to load up on carbohydrates and I should follow that advice.  Sunday I run the Disney Marathon along with other families and friends participating in this race as well as the 5K, Half Marathon in Orlando.  Oh yeah, there’ll be…

Sunday afternoons were special to me as a young boy.  Time moved slowly and the only limits were the ends of my imagination fueled by the most recent western I was watching.  The good guys wore white hats and men protected women and children from attacks by circling covered wagons.  I miss the simplicity of a child’s world and the certainty of solutions that came by following a specific formula. 

Like all kids, I wanted to grow up quickly, failing to realize what I had to give up…

1997 may not seem so long ago, but at times it feels like half a lifetime to me. That was the year my family learned Matthew’s motor difficulties were something physical therapy could not correct and the first time we heard the word Duchenne. Everyone’s world changes after diagnosis of a devastating chronic illness and over the years my family and I experienced many…

When I was young, I remember my parents saying that “ignorance is bliss”. I never liked that expression and it has become more relevant for me when I speak with parents who have children affected by Duchenne muscular dystrophy who are trying to navigate educational or health care systems. Parents are often overwhelmed by the complexity of these programs and their…

Back to school is sometimes more difficult for parents than for their children. This is especially true when their children have developmental or other disabilities that affect their ability to participate in the general curriculum. These children may require specialized supports and services to be successful. Navigating and working with a team of educators and other…

Brian Denger is the father of two sons who are living with Duchenne. He is very involved with PPMD in the effort to educate and help families living with Duchenne.

Vacations and summer are synonymous for many families. When people think of vacations, what often comes to mind is travel to a tourist destination,…

I’d like to say this has “been one of those days”, but if the truth be known it’s more like one of those years.  Life for families affected by Duchenne muscular dystrophy, I have to guess like life for most other people, has its share of ups and downs.  The difference for those living with Duchenne is that it seems once you begin to feel some stability in your life the proverbial rug gets pulled from beneath your feet and reality not only…

Whenever someone asks me how things are with my family I sometimes find myself going into this quasi self preservation state.   It’s as though I have this bubble surrounding me and depending on how large an opening their questions create, more of my world will envelop them.   Maybe “self preservation” is an inaccurate description.  It’s more that I begin this quick assessment of the person asking to determine how much detail I want to provide beyond the cursory “We’re all doing fine”. …

My son Patrick and I had plans to go to Columbia, South Carolina this week. It was to be a father-son weekend just hanging out. While participating in the Exon Skipping Trials at Nationwide Children’s Hospital last year his manual wheelchair was damaged. The airlines repaired the chair and in a “goodwill gesture” they also provided two round trip vouchers for us to use at a later date. South Carolina was Patrick’s choice and he had a good reason for wanting to…

Fall is my favorite season. It is a wonderful time of year from the time summer ends with warm sunny afternoons, cool crisp evenings and long shadows to the mid season with brilliant foliage, the smell of apples and oak leaves that amuse the senses. Even late fall is pleasant when most things turn from crimson and gold to mainly brown, the trees struggle to hang on to a few remaining brown leaves and the temperatures barely stay above freezing. Fall is a comforting season when people turn in…

Having a child affected by Duchenne muscular dystrophy means attempting to maintain a sense of stability which is often an unsteady target.  As we seek normalcy, the very ground we walk on seems to move like a gelatinous surface.  Still, most families cope and deal with each change as it comes while waiting for the next, often holding one’s breath.  There are instances when an event comes out of the blue that challenges the delicate foundation we grasped making us wonder what…

Spring is a wonderful season, although very short in my home state of Maine.  Winter seems to last forever and early spring teases us with a handful of sunny days amidst all the remnants of winter’s dreary gray before a sudden explosion of green late in April.  While the rest of the country complains of pollen and many have been cutting grass for weeks I am still raking winter kill from the lawn.  This year spring is extra…