Community Newsletter  
Autumn 2015  
A Word From Our Founder, Dr. Mark Mintz...

 

 

Bobbi D

I invite you to watch the inspiring story of Bobbi D., newly posted on our website (click here to see the video). She has persevered through years of trials and tribulations with grace, and has emerged a true champion. There are many lessons to be learned from Bobbi's story." 

 

The journey that led Bobbi to CNNH...

In this age of rapid changes in our health care system, with fragmentation of care and weakened physician-patient relationships, the fundamental rule of listening to patients can be neglected. Bobbi experienced this over the years, which led to missed opportunities, misdiagnosis, ineffective therapies, and poor clinical outcomes. 

 

 

After 10 years of frustration and disability, Bobbi learned about CNNH. Bobbi was initially evaluated by a CNNH neurologist (Dr. Chadehumbe, and subsequently Drs. Barabas and Mintz), who listened to Bobbi and trusted Bobbi's intrinsic sense that her issues were biological and not psychiatric. This spurred a quest to find a cause for Bobbi's condition, and a treatable metabolic-genetic disorder was found. Bobbi's long diagnostic journey came to an end, and her path towards recovery and redemption began.

 

Read Bobbi D's Story...


New Jersey Holds First Summit on Autism
Experts Aim to Broaden Definition of Autism

A statewide summit on autism spectrum disorders was held at Montclair State University on Friday, September 18th to bring leading minds in autism together to present the latest research. Among the presenters was Mark Mintz, M.D., President, CEO and Founder of CNNH and President of NeurAbilities


Sleep More!
Top 10 Tips from the Sleep Doc
Brains in Children and Adults Need Rest for Optimal Performance

With homework mounting, phones ringing and so many tempting TV shows to watch at night, children and parents alike are challenged to get enough sleep.  Sound familiar? Not to worry. Follow these 10 tips from CNNH Sleep Medicine specialist, Ralph Gallo, M.D., and lull yourself into blissful and much needed sleep that could improve your memory, your game performance and perhaps even your outlook on life!



Distinguished Pediatric Neurologist Joins CNNH
Welcome to Julia Holtmann, M.D.

It is our pleasure to introduce the latest addition to our expert team: Julia Holtmann, M.D., pediatric neurologist. Dr. Holtmann is available to provide comprehensive evaluations with a personalized treatment approach for concerns such as: 
  • autism spectrum disorders,
  • developmental delay,
  • ADHD and learning differences,
  • epilepsy and seizures,
  • concussion management,
  • sleep disorders,
...and other neurological issues.

"I am thrilled to be joining the CNNH team of experts who are committed to finding the connection between a patient's symptoms and the underlying neurological and biological dysfunction." 
- Julia Holtmann, M.D.



 Patient Perspectives
The Importance of Listening
  picnic-family-young.jpg
Soon after visiting a specialist, many people can expect to find a survey in their mailbox or inbox. Some may wonder what happens to all of that information and if the contribution of time and effort is worth it. We want to reassure our patients that this feedback is not only reviewed, evaluated and addressed by senior staff on a regular basis, but it is also considered a valuable tool in understanding what is important to our patients so that we can do more of what our patients appreciate most.

Curious to know what the feedback is and how it could benefit other families looking for answers? In each quarterly newsletter we will feature the perspective of a patient (or parent) and how it has made a difference for that family. Our hope in sharing this information is to both celebrate a patient's progress and to recognize and acknowledge what is important to our patients...



3 Behavior Tips for Back to School
Staying in the Swing of School Routines
  null
The CNNH Behavior Team works with families, school districts and community providers to evaluate and treat children with behavior concerns. They work closely with the Interdisciplinary Team of experts at CNNH to address a variety of neurological concerns. They bring the following tips for families to manage the busy Autumn days.
 
As October begins and school continues, remember this behavior tip: Consistency is key! 
 
Read 3 Behavior Tips for Back to School...


 5 Self-Care Tips for Caregivers
Improve Your Well-Being
   mother-daughter-kiss.jpg
When caring for loved ones with special needs or other health concerns, caregivers often give so much of themselves that their own well-being becomes neglected. In order to be a fully present and aware caregiver, it is critical to develop a regular "self-care" practice that allows you to maintain your energy and peace of mind. This is not a selfish act and does not negate your caregiving abilities, but rather reflects a healthy awareness of your own needs that can only enhance your abilities to care for others. 



Community Food Bank Event
CNNH's Julia Holtmann, M.D. Joins SPAN in Supporting Food Bank Event

Community FoodBank of NJ hosted an Annual Family Health Fair
on Friday, August 21st. CNNH, along with SPAN and many other organizations came together to donate time, expertise and resources to nearly 200 community members.


 
Ongoing Research

The Clinical Research Center of New Jersey
 
Botox Spasticity Investigational Study
Does your child have cerebral palsy? Does your child have abnormal muscle stiffness (spasticity) in the leg?


Does your child have cerebral palsy? Does your child have abnormal muscle stiffness (spasticity) in the arm and hand?



Epilepsy Study
Still searching for answers to your child's epilepsy?



Autism & Sleep Study
Does your child have Autism spectrum disorder or a Neurogenetic disorder (Smith-Magenis syndrome, Angelman syndrome, Tuberous sclerosis) and suffered for the last 3 months or more from problems getting to sleep and/or staying asleep at night?



NeurAbilities

Autism Research Study
NeurAbilities was awarded a two-year grant to investigate for genetic abnormalities in those with Autism Spectrum Disorders (ASD) associated with intellectual disabilities and/or epilepsy, and determine their clinical manifestations. Findings from this research project may discover new biological causes of ASD's and associated complications, as well as assist clinicians in determining treatments targeting mechanisms of disease rather than symptoms. The Center for Neurological and Neurodevelopmental Health (CNNH) will lead this project, with three collaborating institutions: Courtagen Life Sciences, Coriell Institute for Medical Research and the Mitochondrial Disease Laboratory of St. Christopher's Hospital for Children.


NYU Infant Cognition Lab

Autism Study
Do you have a child with Autism Spectrum Disorder and a baby under 6 months old? Help us recognize early signs of Autism and learn more about your child's development. 6 visits to NYU / Compensation provided / Funded by NIH



CNNH Happenings - Upcoming Events
 
Visit www.cnnh.org/events to keep up-to-date with all of our upcoming events and other community activities. 

LECTURES AND PRESENTATIONS
November 12th - 
 by Greg Alberts, Ph.D., WEBINAR from 12 to 1pm

November 13th - 
"Sleep and Special Needs: How They Impact Each Other"
by Ralph Gallo, M.D., ASAH Conference in Atlantic City (2 to 3:30pm)


November 30th - 
by Sara M.Shane, Psy.D., L.P.C. WEBINAR from 12 to 1pm

December 7th - 
"DEEG Improves Compliance and Acquisition Without Sedation or Restraint..."
"Identification of TRPM6 Channelopathy in Intractable Epilepsy Responsive to Magnesium..."
"Pharmacokinetics of Perampanel in Children with Epilepsy aged 2 to 12 years" 
by Mark Mintz, MD, and Laura Szklarski 

December 16th -
by Julia Holtmann, M.D. WEBINAR from 12 to 1pm


EVENTS/PRESENTATIONS HOSTED AT CNNH
October 27th - 







PAST EVENTS   ...since July 2015
 
Visit www.cnnh.org/events to keep up-to-date with all of our upcoming events and other community activities. 

LECTURES AND PRESENTATIONS
July 29th - 
"Their Song Matters: The Power of Songwriting in Music Therapy for Bereaved Children and Adolescents" 

September 17th -
"Next Steps" Meeting at CNNH - Voorhees (Register Now) 

September 18th - 
Mark Mintz, MD, NJ Autism Center of Excellence Researcher, presenting at 2015 NJ Autism Center of Excellence Summit


EVENTS/PRESENTATIONS HOSTED AT CNNH
July 16th - 
CNNH - Voorhees Open House at new Voorhees Town Center location 

July 28th 
Epilepsy Support Group (Hosted by Epilepsy Foundation of Eastern PA at CNNH - KOP) 

July 29th - 
September 23rd - 
"Creating Agreement/Conflict Resolution" SPAN Workshop Hosted at CNNH - Voorhees from 10am to 12pm. 

October 3rd -
Music Therapy Association Meeting at CNNH - Voorhees


EXHIBITS
August 4th - 
Voorhees Night Out at the Voorhees Town Center in Voorhees, NJ

August 21st - 
Community Food Bank Resource Fair in Hillside, NJ

September 13th 


SPONSORSHIPS






TEAM CNNH PARTICIPATION
October 3rd - 




Community Corner
 
There are so many wonderful organizations in our community working to serve individuals with special needs and their families. For an update of what is happening at CNNH and in the community, please reference the community calendar on our website. Together we can make a difference!



Voorhees, NJ  
 Rutherford, NJ

Wall Township, NJ 
 King of Prussia, PA
 
P: 855.852.8150     F: 856.784.1799
"The staff members at CNNH are unparalleled in their professionalism and passion to see our children succeed. I searched a long time to find a place like this for my children. It's a rare organization that can boast of such dynamic clinicians and diverse services."
- Jacqui E., mother of two sons with autism