Category: Pediatric Neuromuscular Disorder

Calling All Innovators For The “CAREGIVERS SHARK TANK”

Autism, Cerebral Palsy, Down Syndrome, Epilepsy, In The News, Intellectual Disability, Learning Disabilities, Multiple Sclerosis, Muscular Dystrophy, Pediatric Neuromuscular Disorder, Post Traumatic Stress Disorder, Rare Genetic Disorders, Traumatic Brain Injury 04/07/201803/23/2018 admin

The National Caregivers Conference is inviting innovators, inventors, researchers and thought leaders to share their new ideas, products, technology’s, or therapeutic concepts that aim to transform the health and role of family caregivers. The National Caregivers Conference is returning to New Jersey since Superstorm Sandy forced its cancellation in October 2012. This annual conference is renowned for its National level speakers, workshops and exhibitors who address both individual and national issues facing the caregiver community. […]

On Learning That My Brain is Shrinking

Editorial, Featured Topics, Pediatric Neuromuscular Disorder, Rick Rader MD 11/20/201702/28/2018 admin

ANCORA IMPARO BY RICK RADER, MD ■ EDITOR-IN-CHIEF I was quick to process and accept the news that my marinated tofu was shrinking. Doing crossword puzzles, listening to Mahler and navigating cornfield mazes was not going to curtail the shrinkage. My boat was dirty. It was the weekend; I would clean it. The plan was a “no brainer,” and I was soon to learn that the expression “no brainer” was an accurate description. Apparently it […]

Transitions: Moving from pediatric care to adult care can be tricky. Here are eight questions to ask your doctor to facilitate the process.

Down Syndrome, Epilepsy, Healthcare, Pediatric Neuromuscular Disorder 11/14/201703/02/2018 admin

Kritz, Fran Neurology Now: October/November 2017 – Volume 13 – Issue 5 – p 10–11 Many neurologic diseases, such as epilepsy, spinal muscular atrophy, muscular dystrophy, or Down syndrome, begin in childhood when patients are seen by pediatric neurologists. What happens when these patients age into adulthood? Do they stay with their pediatric specialist or switch to a neurologist who treats adults or both children and adults? The accepted wisdom is to transition to doctors […]

My Family’s Journey With Duchenne Muscular Dystrophy

Featured Topics, Pediatric Neuromuscular Disorder, Wellness 08/22/201608/23/2016 admin 0 Comments

BY BETTY VERTIN As we wait to see what will happen, I take each day as it comes and continue to fight to make sure my boys will have access to this drug – it is our only hope at this stage. I have three sweet boys with a rare genetic disease called Duchenne muscular dystrophy (DMD), a progressive condition that causes gradual muscle loss and weakness and eventually robs people of the ability to […]