AANEM News Express

AANEM News Express

Today is World Duchenne Awareness Day!

9/7/2018
 
AANEM is proud to help increase understanding about Duchenne muscular dystrophy (DMD) on World Duchenne Awareness Day! The AANEM recently featured stories about two young boys living with DMD. Take a moment to read about Beck and James and view available AANEM resources to help expand your knowledge of this disease.  
 
What is DMD?
Duchenne muscular dystrophy (DMD) is the most common of the muscular dystrophies affecting one in 3,500 boys. Boys with DMD usually show symptoms of the disease by age three. The first symptoms may be a delay in achieving independent walking. A "waddling" quality to the child's walking and running is often noted. Difficulty in getting up from a seated position on the floor is commonly seen. The disease is progressive, and boys generally lose the ability to walk by age 15 (many at a much younger age). Read more 
 
Patient Stories 
Meet Beck Cammarata, 7-Year-Old Living with Duchenne Muscular Dystrophy
In many ways, Beck Cammarata is like most 7-year-olds. He plays Cops and Robbers at recess with his friends, loves cars, and as many kids do, fights with his older sisters. But Beck has also endured much more than most kids his age as a child living with DMD. Read more
 
James Ramirez’s First Grade Life: Hot Wheels, Rock, Music, and Duchenne Muscular Dystrophy
Six-year-old James Ramirez enjoys watching “The Magic School Bus” and dinosaur movies, playing with his Hot Wheels cars, and listening to rock music. His mother, Samantha, describes him as a “little goofball who is full of energy.”
 
While he may be energetic, as much as he tries, James just cannot keep up with the other kids his age because his muscles don’t work as well as theirs.
 
The official diagnosis of DMD came on September 6, 2016, James’ first day of kindergarten. Read more
 
DMD to be Featured Topic at 2018 AANEM Annual Meeting
One of the plenary sessions at the 2018 AANEM Annual Meeting will be fully devoted to DMD. The session is being held Saturday, October 13, 2018, from 10:00 am to 12:00 pm at the Gaylord National Resort and Convention Center in the Washington, DC area. 
 
Precision Medicine: Therapeutics in Duchenne Muscular Dystrophy: Dystrophin Restoration and Exercise Mimetics
Faculty: Craig M. McDonald, MD, Professor and Chair, Department of Physical Medicine & Rehabilitation, University of California, Davis
 
If you are a physician, technologist, researcher or collaborator specializing in neuromuscular disease and interested in attending this session, you may register to attend the 2018 AANEM Annual Meeting. Online registration is open through September 25, 2018. 
 
Additional AANEM Resources on DMD
Please note that some of the materials below may be accessible to AANEM members only. 
Make a Donation
On this World Duchenne Awareness Day, please consider making a donation to the AANEM Foundation. Your donation will fund scientific research to help find treatments and cures for neuromuscular diseases like DMD. Donate today.  


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