The collective goal of Infantile Spasms Week (ISAW) is to increase awareness and understanding of infantile spasms through: developing and distributing educational materials to providers, caregivers, and the public; announcing new and useful research and support initiatives; recognizing exemplary contributions to care and inviting families living with IS to be part of a larger community—many stories with one voice. ISAW is held December 1 through 7 each year. #ISAW2017 #onevoice.
This year, during ISAW 2017, the Infantile Spasms Action Network proudly presents the STOP Infantile Spasms mnemonic.
About Infantile Spasms
Infantile spasms (IS) affect newborns before the age of one and in some children, occurring up to age two. IS impacts 1,200 infants per year, and while rare, these seizures can cause long-term damage to a child’s developing brain. Infantile spasms are characterized by repetitive, but often subtle movements—such as a jerking of the mid-section, raising of the arms similar to a startle reflex, head bobs, or wide-eyed blinks. IS can happen in clusters, dozens at a time, and in some cases, leading to hundreds of seizures per day if left untreated. IS can result in increased risks for developmental delay, lifelong intractable epilepsy, autism, and even death. Fortunately, treatments are available to help control the spasms. Prompt identification and treatment of IS is critical, but IS often has a subtle appearance, so it is difficult for parents to recognize that it is a serious problem. Our resources can help.
What Do Infantile Spasms Look like?
On this page under the “Resources” tab, watch videos of what infantile spasms often looks like in babies. There are also videos and information from IS experts and families living with IS. Some videos are available in English and Spanish.
Infantile Spasms Action Network (ISAN)
In 2015, CNF partnered with the Tuberous Sclerosis Alliance (TS Alliance) to lead a multi-year IS awareness and education initiative. IS efforts are showcased during Infantile Spasms Awareness Week (ISAW) – see below – held annually during the first week in December.
In 2016, CNF convened two forums that brought together epilepsy advocates and leaders from provider member societies. The group discussed a comprehensive strategy to raise IS awareness. In 2017, this group – the Infantile Spasms Action Network (ISAN), convened by CNF, is a collaborative network of over 20 national and international entities focused on raising awareness for infantile spasms.
ISAN will be unveiling a collaboratively-developed mnemonic that will increase awareness and understanding of IS among families, clinicians, and the public. The mnemonic will be introduced during ISAW 2017.
CNF provides Infantile Spasms Awareness Grants to advocacy partners interested in building awareness for IS. Funded projects are to be implemented in conjunction with ISAW. The 2017 Grant recipients are: American Academy of Pediatrics | CURE Epilepsy | Danny Did Foundation | Dup15q Alliance | Mickie’s Miracles
We encourage you to visit the websites of these wonderful organizations to see first-hand their commitment to the child neurology community.
2017 ISAN Members: American Academy of Neurology | American Academy of Pediatrics | American College of Emergency Physicians | American Epilepsy Society | Association of Child Neurology Nurses | Bcureful | Belgium TSC | The Brain Recovery Project: Childhood Epilepsy Surgery Foundation | Child Neurology Foundation | Child Neurology Society | CURE Epilepsy | Danny Did Foundation | Dup15q Alliance | Epilepsy Foundation of America | Global Genes | Greenwich Biosciences | Lennox-Gastaut Syndrome Foundation | Mallinckrodt Pharmaceuticals | Mickie’s Miracles | National Organization for Rare Disorders (NORD) | RARE Science | Seizure Tracker | Tuberous Sclerosis Alliance | Upsher-Smith Laboratories
Questions about ISAN? Want your organization/company to get involved? Contact firstname.lastname@example.org.
This year, ISAW is being held in conjunction with the American Epilepsy Society meeting in Washington, DC. Detailed ISAW events coming soon.
Congressional Briefing Breakfast: Tuesday, December 5 (8:30 – 10 am). The purpose of this briefing is to raise awareness of infantile spasms, the urgent need for accurate diagnosis, current treatments available and research on the horizon to prevent these seizures. For questions about the briefing, contact Stephanie Mucha at email@example.com
ISAW Grants & Awards
Brendan Michael Harnett Mini-Grant. The Harnett Mini-Grant was founded by Mr. Michael Harnett in January 2014 as a memorial to his nephew, Brendan, who was diagnosed with IS and passed away before his first birthday. Each year, in honor of ISAW, one $1,000 mini-grant is awarded to a child with IS and his/her family to cover the cost of medical devices, treatments, therapies, or other services not covered by insurance. To be alerted about the next grant cycle, click here.
Congratulations to Christopher Bowen Jr, (age 19 months) and his family from Wyoming — the 2017 Harnett Mini-Grant recipients. Christopher’s mother shares their story: “Christopher was a bright boy from the beginning. Around 11 months we noticed that he would do a weird bend involving his torso and his arms. He was diagnosed with focal cortical dysplasia and IS. He had regressed in development from 12 months to 6 months old because of this. We immediately began the front line medicines but soon found out that he had an intractable form of epilepsy. After almost a year of meds, the doctors have made the decision to do surgery to remove the lesion in his brain at the end of the year. Infantile spasms destroyed us. But Christopher shows developmental improvement every day and a desire to beat the odds. His personality lights up the room and he has a smile to melt anyone’s heart. This grant has been a lifesaver. It was my birthday when u found out my baby got it and it was the best birthday of my life. I will cherish this gift forever. Thank you so unbelievably much.”
Second Infantile Spasms Mini-Grant. CNF received so many applications for the Harnett mini-grant from families in need, that an anonymous donor wanted to support another family. CNF matched that donation and we proudly announce that a second $1,000 grant was made available.
Congratulations to Sawyer Khalaf, (age 18 months) and his family from Minnesota — the recipients of the a second IS Mini-Grant. Sawyer’s mother shares their story: “Sawyer and his twin sister Quinn were born at 27 weeks. Sawyer weighed albs 6.5oz. At two weeks old Sawyer became violently ill with Necrotizing Enterocolitis. In a matter of hours they were preparing us to say our goodbyes. Our little Superman fought through and due to complications he sustained a brain injury. Not only did he sustain a brain injury but he developed Hyrdrocephalus. Sawyer has had 4 brain surgeries in his short life. We began noticing Sawyer “reaching” for things over and over in March, shortly after his g-tube surgery. We weren’t sure what to think about them but when it was brought up to the pediatrician she seemed to think it could be his startle reflex. During a routine screening with Neurology before our upcoming appointment for developmental delays the nurse caught something I said and ordered an EEG. At the EEG they discovered he had 19 seizures in 40 minutes. We had NO idea he was even having them. Sawyer is now on medication to help him stay seizure free. Sawyer is a happy little boy that is full of joy. We are so proud of how much he has overcome and now that he is seizure free he is hitting his milestones. He is trying to crawl and walk, loves standing, eating sweet potatoes and bananas and is so interactive with his sister and family. It’s fun to hear him talking and babbling across the room. The only chair we have currently to get him on the ground with her is his bath tub seat so we are so excited to have a seat he can actually get on the floor and play with his sister! They have a special bond and it is fun to see them play.”
Infantile Spasms Heroes Award. Sponsored by CNF, the IS Heroes Award recognizes a health care provider for making a positive difference in the life of a child with IS. Nominations are accepted from parents and caregivers, acknowledging a provider who has embodied the heroic spirit of compassionate and efficacious care during diagnosis or treatment of IS. To be alerted about the next grant cycle, click here.
Congratulations to the 2017 Infantile Spasms Heroes Awardee, Dr. Dana Alhaqan. Dr. Alhaqan practices at Amiri Hospital in Kuwait City, Kuwait. Dr. Alhaqan was nominated by a family who feels she is truly their daughter’s hero. “Although she is a pediatrician not a neurologist, Dr. Dana changed our daughter’s life by taking the initiative and observing her closely and arranging the required tests and consultation with other specialists and other hospitals in Kuwait. Dr. Dana managed to remove all obstacles in front of us to get a clear diagnosis and receive the appropriate treatment.” Access the press release announcing this award.
Infantile Spasms Hope Award. Sponsored by Tuberous Sclerosis Alliance, the IS Hope Award honors a family who has not only demonstrated courage in the face of their child IS diagnosis, but also shared their experience generate IS awareness of IS and educate other parents on a similar journey. To be alerted about the next grant cycles, click here.
Congratulations to the 2017 Infantile Spasms Hope Award recipients, Paul and Lisa Rossignol. The Rossignol’s 10-year-old daughter Lily endured a prenatal stroke and was diagnosed with IS at 6 months old. Because her seizures were drug resistant, Lily had the right half of her brain removed. She’s been seizure free ever since. According to the Rossignols’ award nomination, “They educate and advocate for improved health care policy, family-centered care, and the importance of community support and resources for each family. The entire Rossignol family has been assets to others facing a new diagnosis of any disability offering in-person and distant support through phone calls, prayer chains, social media support, care packages, fundraising, and vigils.” Access the press release announcing this award.