Welcome to Families First, the CNF e-newsletter for parents and caregivers of children with neurologic conditions. Today marks the beginning of Infantile Spasms Awareness Week (ISAW) 2015. 

A collaborative initiative sponsored by the Child Neurology Foundation and the Tuberous Sclerosis Alliance, the goal of ISAW is to increase awareness and understanding of infantile spasms through the distribution of objective educational materials to providers, caregivers, and the public; the announcement of new and useful research and support initiatives; the recognition of exemplary contributions to care; and the declaration to patients and caregivers that There is help! There is hope!

Please lend your support by increasing awareness of this devastating form of childhood epilepsy by sharing this information with your circle of influence and joining the online conversation. See our digital advocacy kit below for ways to spread the message!


Infantile Spasms Heroes and Hope Awards

As part of ISAW, the Child Neurology Foundation awards one heroic healthcare professional �and his/her medical institution - nominated by a caregiver  -  with the Infantile Spasms Heroes Award.  The IS Heroes Award was established in 2010 to recognize a deserving healthcare professional for making a positive difference in the life of a child with infantile spasms by embodying the heroic spirit of quality, compassionate, and efficacious care during diagnosis or treatment of IS.

2015 Infantile Spasms Heroes Award Recipient
Dr. John Mytinger
The Ohio State University at Nationwide Children's Hospital

Dr. John Mytinger graduated from Albany Medical College in 2005.  In 2012, he completed his pediatric neurology residency, neurophysiology fellowship, and epilepsy fellowship - all performed at the University of Virginia.  In 2007, he met his first patient with infantile spasms.  Unfortunately, this child's infantile spasms diagnosis was delayed for many months.  His underlying condition and long treatment delay resulted in profound developmental regression.  His subsequent diagnosis and appropriate treatment led to the remission of his infantile spasms and developmental stabilization.  Although he subsequently made significant developmental progress following his remission, a 2015 update revealed profound intellectual and motor disability as well as intractable epilepsy with up to 120 non-infantile spasm seizures per day.  The consequences of the delayed diagnosis to the patient and his family had a profound impact on Dr. Mytinger's career.  For the remainder of his training, Dr. Mytinger sought out patients with infantile spasms and coordinated their care with the goal of improving outcomes and providing a local clinician resource for caregivers. After finishing his training in 2012, Dr. Mytinger accepted a position with The Ohio State University at Nationwide Children's Hospital.  His plan was to create a multidisciplinary Infantile Spasms Program in an effort to improve patient outcomes and provide a framework to support caregivers.  Dr. Mytinger is the Director of the Infantile Spasms Program.  Since 2012, children with infantile spasms presenting to Nationwide Children's Hospital are referred to the Infantile Spasms Program and treated with a standardized management guideline.  This program emphasizes early diagnosis and treatment, the use of first-line therapy, early changes in therapy if needed, and diligent clinical and electroencephalogram follow up to ensure the best possible developmental and seizure outcomes for each child.  There are numerous contributors to the program who all play a critical role.  The team includes nurses, nurse practitioners, a developmental psychologist, a pharmacist specializing in pediatric epilepsy, child neurology residents, child neurology attendings, and others.  He and his team have shown that the Infantile Spasms Program has improved the rate of infantile spasms remission at Nationwide Children's Hospital.  To learn more about Dr. Mytinger's approach to infantile spasms, listen to him speak on-line (skip to 7 minutes into the broadcast): http://traffic.libsyn.com/pediacast/pediacast_281.mp3

2015 Infantile Spasms Hope Award Recipient
Danielle Boyce
Bala Cynwyd, PA

Danielle Boyce is a mother of two children, including a son, Charlie, who had infantile spasms.
 Danielle holds a BA in political science and a Master's in Public Health with a concentration in epidemiology.  She currently works for Johns Hopkins University School of Medicine and has co-authored numerous peer-reviewed articles. She serves on the board of directors of the Lennox-Gastaut Syndrome Foundation, is an FDA Patient Representative for infantile spasms, is on the Steering Committee for the Rare Epilepsy Network, and conducts family support workshops on a variety of epilepsy-related topics. She authored a children's book, Charlie's Teacher, inspired by her daughter's experiences as the sibling of a child who receives home-based therapies. Danielle also volunteers for Autism Inclusion Resources, an organization that helps families affected by autism to venture out into their community. Danielle's inclusive programming work with a Baltimore museum was featured at a national museum conference in 2013.
 
To learn more about Dr. Mytinger and Ms. Boyce and read their nomination stories, please visit www.ISweek.org
Online Events this Week

December 1 at 8pm (EST)
TS Alliance Webinar: 
 Infantile Spasms, Translational Research, and Upcoming Clinical Trials 

Guest Speakers:
Dr. Martina Bebin
Dr. Darcy Krueger
Dr. Steve Roberds,
Dr. Steve White (CURE)

No pre-registration is required. 

Simply go to:
at 8pm (EST) for video component. 

For audio, call:
Toll-free: +1 (866) 613-5223 | Conference Code: 7851824#
 
December 2 at 3pm (EST)
Infantile Spasms Twitter Chat 

This Twitter-based chat will feature leading epileptologists to answer your questions about infantile spasms. 

To participate simply visit www.crowdchat.net/isawchat and click "Add to Calendar." 

You'll be prompted to make a CrowdChat account using a Twitter, Facebook or Linkedin account. Then return to
 
www.crowdchat.net/isawchat� on December 2 to enter the chat. 

Have a question about infantile spasms you want answered? Send it to [email protected] ahead of time so we're sure to include it in the chat.
ISAW 2015 is supported by charitable contributions and educational grants from the following sponsors:
   .



Child Neurology Foundation
| 201 Chicago Avenue #200|Minneapolis, MN 55415 |
Copyright � 2015. All Rights Reserved.