A collaborative initiative sponsored by the Child Neurology Foundation and the Tuberous Sclerosis Alliance, Infantile Spasms Awareness Week (ISAW) is held annually from December 1 to 7. 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!
This year’s awareness campaign encompasses a wide range of activities to help educate both the general pubic and the medical community about the importance of quickly diagnosing and treating infantile spasms. These efforts include a continuing medical education (CME) course during the Child Neurology Society’s annual meeting, new educational videos from the TS Alliance and the Child Neurology Foundation, a TS Alliance Town Hall Series, educational webinars, a media tour on December 3 as well as an array of events during the American Epilepsy Society (AES) Annual Meeting December 4-7 in Philadelphia. View the complete ISAW 2015 Events Schedule.
Community Educational Opportunities
- TS Alliance Town Hall Series (various dates)
- November 19 at 2p (EST) – CNF Webinar: Child Neurology Community Conversations from the
Voices of the Provider, Caregiver, and Advocate – Navigating Infantile Spasms Diagnosis and Treatment Together: Watch this webinar on our Webinar Archive Page
- December 1 – Online Infantile Spasms Awareness Widget Release
- December 1 at 8 p.m. ET – TS Alliance Webinar: Infantile Spasms, Translational Research and Upcoming Clinical Trials
Guest Speakers: Drs. Martina Bebin, Darcy Krueger, Steve Roberds and Steve White (CURE)
- December 2 at 3 p.m. ET – Infantile Spasms Twitter Chat
- December 4 at 7:30 p.m ET – AES TS Alliance Reception with presentation of Infantile Spasms Hope Award
- December 7 from 10 a.m.-2 p.m. ET – AES Innovation Pavilion with presentation by Infantile Spasms Hero Award Winner, Family Stories, Infantile Spasms Community Video Series, and IS Research Poster Exhibit
#ISAW2015 Digital Advocacy Tool Kit
ISAW 2015 Opportunities and Initiatives
BRENDAN MICHAEL HARNETT INFANTILE SPASMS MINI-GRANT
AND ADDITIONAL INFANTILE SPASMS MINI-GRANTS
The Harnett Mini-Grant was founded by Mr. Michael Harnett in January 2014 as a memorial to his nephew, Brendan Michael Harnett, who was diagnosed with Infantile Spasms and passed away before his first birthday. Each year during ISAW, one $1,000 mini-grant is awarded to a child with infantile spasms and his caregivers to cover the cost of medical devices, treatments, therapies, or other services not covered by insurance.
In 2015, CNF will award 12 additional mini-grants. To learn more and apply, visit the IS Mini-Grant Application Form page.
Here is how the 2014 Harnett Mini-Grant recipient utilized the funds:
“I felt compelled to give an update of how our family used the grant we received in 2014-2015.
Our first purchase was the GoTo Seat which continues to make our life easy and more enjoyable for our entire family, especially our big boy. Secondly, we created a family estate plan. This was a big need/priority with my husband being a local police officer. Lastly, I paid for a 4-week CNA Class and graduated in July. I’m now employed with a local home health agency and contracted as our son’s personal CNA. This has been a tremendous financial blessing to our family.
Truly, from the bottom of our hearts, thank you for your generous grant. We have been faithful stewards of those funds and they continue to bless us over and over again. Thank you for the work you do and the care you give to families like us.”
INFANTILE SPASMS HEROES AWARD
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
Dr. Mytinger was nominated by not one but two families for his outstanding care of their children.
-My Little One was diagnosed with West Syndrome (Infantile Spasms) in January 2014. His symptoms started with 3-4 clusters of what looked like a let down, and his pupils would dilate. Thank God that Dr. Mytinger was at Children’s because my son was first diagnosed with focal partial seizures, and Dr. Mytinger came on to the team, looked over the EEG, saw the spasms, and diagnosed IS. He started treatment right away. He came into our room, sat down, and gave us this horrible diagnosis with such compassion! He stayed on top of everything. He would call us at home from his home to check in and to see how our son was and how treatment was going. He never waited long if treatment was working to switch to another. He expressed the urgency of getting the spasms under control in order to have the best outcome! After every EEG he would take us into his office and go over everything, showing us past and present EEG’s. He felt like part of the family. I felt like our son was his only patient when I knew that he wasn’t. He was a very busy man but made our family and every family dealing with IS important. His fight saved my son. He never stopped searching for the next treatment. We are very grateful to him for giving us back our son!!! My son is thriving today! He just turned two and he is the cutest happiest little boy in the world. He is working on walking and changing and becoming stronger every day! He is a true fighter! We are thankful to Dr. Mytinger for giving us back our hero!
-My son was diagnosed the week he turned 5 months old. He had the “typical” spasms and a loss of some personality. Within a week of first seeing a spasm, we went to Children’s Hospital ER and received an EEG. Initially misdiagnosed, given Keppra, and told we would be released in the morning. Thankfully, Dr. Mytinger saw the EEG and came and told us our son had IS. We went through all the standard tests the next day and started ACTH before leaving the hospital. We relapsed a month after the wean, immediately started Sabril, and have been seizure free since. Today at two, our son is in the low end of average. We still have a delay in expressive speech, but he is making gains weekly. To someone who doesn’t know his diagnosis, he seems like a neuro-typical toddler.
If it wasn’t for Dr. Mytinger, I don’t know what my son’s outcome would have been. We would have lost valuable time on a medication that is not a treatment for IS. He started an IS clinic at our hospital; and, without it, we would be driving 4 or more hours to another clinic for treatment. Other than fast, accurate care in our son’s case, he has dedicated time outside of the normal day to treat patients. When we relapsed, we went to the hospital at night, and he read the EEG at home, called us, and walked us through starting Sabril. He was even off work for medical reasons but continued reading EEGs from home and coordinating with his staff to continue giving his patients the level of care they deserve. I have yet to encounter another medical professional so willingly to give their patients the same level of care.
INFANTILE SPASMS HOPE AWARD
New in 2015, the Infantile Spasms Hope Award honors a family or individual who not only demonstrated courage in the face of their child’s diagnosis of infantile spasms, but also has used their experience and shared their story to help generate awareness of IS and educate other parents facing this devastating form of seizures. Hope Award nominations were reviewed by individuals from the partner organizations, families who have lived with infantile spasms and three representative physicians.
2015 Infantile Spasms Hope Award Winner
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.
Danielle is the Executive Director of Infantile Spasms Community. She also 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.
From Danielle’s Hope Award nomination:
The Boyce family has been very courageous for sharing their story witht he infantile spasms community and the Child Neurlogy Foundation. Danielle and her family moved to be closer to Charlie’s neurologist to get the best care. Charlie has under gone two brain surgeries, is on the ketogenic diet and AEDs, and is a fighter. Charlie is loved by his sister, Ryan and mother, Danielle Boyce. He is now 5 years old and attends a special school where he works hard at circle time and therapies.
Danielle Boyce is a strong woman who is very supportive, compassionate, and caring to all families having to cope with infantile spasms in a couple different ways. She is the director of Infantile Spasms Community Facebook page and is there to keep everyone afloat on epilepsy research studies that can be participated in, new information about infantile spasms, and help answer any questions or just there to talk.
Moreover, she has shared her story with the infantile spasms community and the Child Neurology Foundation and is living proof that you have to have hope and never give up no matter what lengths you have to go to.
INFANTILE SPASMS INFOGRAPHIC-Little Seizures: Big Consequences
Click infographic to view printable PDF version.
Click here to request printed copies.
New Infantile Spasms Educational Videos
Entrevista de Espasmos Infantiles
Los Prolongados Efectos de Espasmos Infantiles
Infantile Spasms: Moving Quickly to Diagnosis and Treatment
ISAW 2015 is supported by educational grants from the following sponsors: